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Speaker 1: Hey to your Therapist listeners. It's Lori and Guy and

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Speaker 1: we have a quick update.

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Speaker 2: Many of you have told us that you get something

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Speaker 2: new out of each episode when you listen to it

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Speaker 2: again the second or third time. In fact, when we

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Speaker 2: listen to the episodes again, we also get takeaways we

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Speaker 2: didn't remember.

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Speaker 1: We're They're therapy is like that too. There are so

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Speaker 1: many learning moments in a session, and it's difficult to

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Speaker 1: absorb them all at once. So while we're not taping

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Speaker 1: new episodes right now, we are offering you our most

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Speaker 1: popular sessions as encores so that you can continue to

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Speaker 1: gain value from them.

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Speaker 2: We love doing the Therapists episodes, but we're each busy

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Speaker 2: with new and exciting projects that we hope you will

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Speaker 2: love just as much.

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Speaker 1: I have a new advice podcast called Since You Asked,

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Speaker 1: which you can get wherever you listen to podcasts.

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Speaker 2: And I have a new book coming out. It's called

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Speaker 2: Mind Overgrind, How to Break Free when work Hijacks your life,

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Speaker 2: and it will be published by Simon and Schuster. You

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Speaker 2: can find out more about it on my website.

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Speaker 1: You can learn more about these on our socials. And meanwhile,

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Speaker 1: we hope you find these Dear Therapist sessions as valuable

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Speaker 1: as we have making them for you. Hey, fellow travelers,

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Speaker 1: I'm Lori Gottlieb. I'm the author of Maybe You Should

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Speaker 1: Talk to Someone, and I write the Dear Therapist column

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Speaker 1: for The Atlantic.

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Speaker 3: And I'm Guy Winch. I wrote Emotional First Aid, and

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Speaker 3: I write the Dear Guy call Um for Ted. And

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Speaker 3: this is Deo Therapists.

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Speaker 1: This week, a young woman struggles to find a balance

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Speaker 1: between taking care of her own needs and caring for

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Speaker 1: her husband, whose chronic illness is taking a toll on

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Speaker 1: their marriage.

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Speaker 4: We got married, we were in this together. I'm definitely

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Speaker 4: scared that our marriage could fall apart. I just don't

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Speaker 4: know what to do without making it like this is

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Speaker 4: his problem.

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Speaker 1: Listen in and maybe learn something about yourself and the process.

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Speaker 3: The therapist is for informational purposes only, does not constitute

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Speaker 3: medical advice, and as not a substitute for professional medical advice, diagnosis,

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Speaker 3: or treatment. Always seek the advice of your physician, mental

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Speaker 3: health professional, or other qualified health provider with any questions

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Speaker 3: you may have regarding a medical condition. By submitting a letter,

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Speaker 3: you are agreeing to let iHeartMedia use it. In Potter

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Speaker 3: and full, and we may edit it for lengthen or clarity.

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Speaker 3: Hi Guy, Hey Laurie.

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Speaker 1: So I can't believe it, but here we are wrapping

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Speaker 1: up our very first season of Dear Therapists. It feels

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Speaker 1: like it has just flown by.

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Speaker 3: It really does. And when I think of all the

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Speaker 3: topics that we've covered, and all the lovely people that

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Speaker 3: we've spoken to, and all the emails from people telling

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Speaker 3: us how much they took away from each episode, it's

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Speaker 3: been quite a journey.

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Speaker 1: And what I love the most is when people write

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Speaker 1: and say that, even though they haven't found themselves in

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Speaker 1: exactly the same situation, that they've taken our advice and

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Speaker 1: applied it to their lives in different ways. And that's

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Speaker 1: what we're trying to do here. And because we think

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Speaker 1: about our last episode of the season, we wanted to

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Speaker 1: choose a letter that really reflected twenty twenty.

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Speaker 3: Yeah, and for us, and I think for many many people,

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Speaker 3: twenty twenty was about being able to care for yourself

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Speaker 3: even as we're caring for one another, and finding that.

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Speaker 1: Balance that's right. And so this week we have a

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Speaker 1: letter about a really common relationship dynamic that people don't

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Speaker 1: talk about enough and it has to do with what

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Speaker 1: happens when somebody in the relationship needs care and the

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Speaker 1: other person has to be both the partner and the caregiver.

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Speaker 1: So here's how the letter goes. Dear therapists, My husband

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Speaker 1: said has sickle cell disease, and over the past three years,

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Speaker 1: it seems like the pain keeps getting worse, lasts longer,

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Speaker 1: and he's out of it for more days each week.

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Speaker 1: Medically speaking, he's in pretty decent shape. His blood work

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Speaker 1: is good for his condition, so there isn't much the

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Speaker 1: doctors can do as it gets worse and worse. It's

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Speaker 1: really affecting our marriage emotionally, financially, and physically. I sometimes

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Speaker 1: feel like more of a nurse than a wife, and

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Speaker 1: I try really hard not to put any additional stress

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Speaker 1: on him, hoping that if he doesn't have to deal

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Speaker 1: with the usual stressors of life that he'll get better faster. This,

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Speaker 1: in turn, puts a lot more pressure on me, so

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Speaker 1: I feel like a stressed out mess a lot of

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Speaker 1: the time. It's gotten so bad that I'm terrified about

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Speaker 1: what the future will look like. I'm also afraid that

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Speaker 1: once he does start to feel better, I'm just going

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Speaker 1: to be waiting for the other shoe to drop. I

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Speaker 1: feel like I'm sabotaging our marriage because I'm not sure

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Speaker 1: how much more I can handle. Do you have any

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Speaker 1: suggestions about how to manage the situation? Thanks Savannah.

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Speaker 3: Sickle cell disease is a blood disorder that causes your

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Speaker 3: body to make an unusual form of hemoglobin and that

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Speaker 3: has all kinds of impacts. It creates anemia blockage, but

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Speaker 3: the biggest symptom is these crises of pain that can

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Speaker 3: be short or long and intense. The pain can be

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Speaker 3: very severe, and it's the biggest part of sickle cell

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Speaker 3: that people tend to deal with. It's hereditary, it's life long.

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Speaker 3: To be a caretaker in a relationship in a marriage

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Speaker 3: is very difficult because you have to juggle the needs

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Speaker 3: of the quote unquote patient with the emotional needs of

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Speaker 3: each of the individuals, with the needs of the relationship

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Speaker 3: and of the couplehood. And is a lot to juggle

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Speaker 3: for one person. And usually the person who is put

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Speaker 3: lost on the list is the caretaker in terms of

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Speaker 3: taking care of their own needs.

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Speaker 1: And not only is that person last on the list,

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Speaker 1: but they feel guilty for having any needs. They feel

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Speaker 1: like I can't have any needs because this other person's

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Speaker 1: needs are so much more significant than mine. And so

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Speaker 1: the daily things that come up in a marriage, the

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Speaker 1: daily things that come up in a person's life, they

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Speaker 1: feel like, I don't want to burden my partner with this,

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Speaker 1: and yet that's the stuff of marriage. And so we

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Speaker 1: want to find out a little bit about how that

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Speaker 1: got lost. And I think there's another aspect to this,

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Speaker 1: which is the fear that sometimes people can't talk about,

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Speaker 1: like the hard things. Is this person's life expectancy going

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Speaker 1: to be shortened? Am I going to be left alone?

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Speaker 1: Is this person going to die? Is this person going

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Speaker 1: to have this acute pain crisis? That is really hard

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Speaker 1: for me to watch because I love this person so

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Speaker 1: much and it scares me when I see this. And

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Speaker 1: sometimes the caregiver partner feels like I can't talk about

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Speaker 1: my feelings about this with anyone. I don't want to

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Speaker 1: alarm the person that I'm feeling this way. And what

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Speaker 1: gets lost in all of this is that there's still

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Speaker 1: a married couple. So how do they bring the marriage

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Speaker 1: aspect of this some normalcy into a situation that isn't

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Speaker 1: quite normal.

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Speaker 3: Yeah, there's a lot we need to find out here,

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Speaker 3: let's go talk to her. You're listening to Deal Therapists

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Speaker 3: from iHeartRadio. We'll be back after a quick break.

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Speaker 1: I'm Lori Gottlieb and.

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Speaker 3: I'm Guy Wench and this is Deo Therapists.

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Speaker 1: Well, Hi Savannah, Hi, how are you good?

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Speaker 3: And welcome to the show.

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Speaker 5: Thanks for having me.

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Speaker 3: So, Savannah, we read you Aletta, and we chose it

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Speaker 3: because it's such a common situation for somebody and a

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Speaker 3: couple to require caretaking for a medical condition. But we

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Speaker 3: wanted to stop by maybe getting a little bit of

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Speaker 3: history about you and the marriage.

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Speaker 4: Yeah, so we met about eight years ago through friends

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Speaker 4: of friends. We were going to the same club, just

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Speaker 4: on an outing. One thing led to another and we

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Speaker 4: have now been married for over three years.

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Speaker 1: When you first met, had he been diagnosed with sickle

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Speaker 1: cell disease? Usually people are diagnosed in childhood.

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Speaker 4: Yeah, he knew, His parents knew before he was born,

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Speaker 4: so he grew up with it.

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Speaker 1: And what was your reaction when you found out? Did

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Speaker 1: you understand what that meant?

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Speaker 5: I don't think I understood the gravity of it.

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Speaker 4: It took a while for him to tell me that

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Speaker 4: that was the case, and I remember googling, you know,

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Speaker 4: just to understand more about what it is, and it

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Speaker 4: was so irrelevant in the beginning, like he just seemed

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Speaker 4: like such a normal person who did everything that his

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Speaker 4: friends did. We went out and hung out and drank,

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Speaker 4: you know, we're normal, like twenty five year olds, and

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Speaker 4: he was in law school at the time, and that's

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Speaker 4: not an.

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Speaker 5: Easy thing to do.

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Speaker 4: So yeah, it just didn't even cross my mind that

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Speaker 4: it would become anything bigger than what it was.

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Speaker 3: And when did it stop becoming a thing?

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Speaker 4: So right after we got married, we moved to Seattle,

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Speaker 4: and it was a couple months after that that it

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Speaker 4: just became this thing, like every day where he was

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Speaker 4: in pain, and then he would be taking more and

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Speaker 4: more medication and I would leave him not to be

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Speaker 4: able to get through the day because he was so

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Speaker 4: out of it. And so for the last almost three years,

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Speaker 4: it's been a pretty consistent thing. We moved in together

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Speaker 4: about two years before we got married. I remember thinking

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Speaker 4: at the time that it was definitely worse than what

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Speaker 4: I had initially expected when we weren't living together, but

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Speaker 4: not nearly as bad. It was the minor pain that

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Speaker 4: was here and there that I started to see that

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Speaker 4: I never used to see before.

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Speaker 5: But it wasn't debilitating.

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Speaker 1: It just was there when you started to see some

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Speaker 1: of the symptoms when you moved in together. Did you

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Speaker 1: ever at any moment think I'm worried about what this

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Speaker 1: could become or I'm worried about marrying this person.

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Speaker 4: No, I only thought about it as like I'm worried

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Speaker 4: about the impact that it has on his life. I

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Speaker 4: never really thought about it in relation to to myself.

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Speaker 3: When did you start thinking about it in relation to you?

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Speaker 5: Probably within the last year.

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Speaker 4: We had moved out of Seattle to la thinking that

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Speaker 4: the weather would make things better and get back to

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Speaker 4: sort of normal or as normal as can be. That

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Speaker 4: year that we were in Seattle, it was sort of

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Speaker 4: like just learning about it being bad and seeing how

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Speaker 4: it happened, and then focusing so much time on getting

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Speaker 4: out of there. And then the last couple of years

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Speaker 4: in LA I think over the last year is sort

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Speaker 4: of where I started to see it affecting me more

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Speaker 4: and more.

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Speaker 3: And what's his level of functioning? He was in law school?

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Speaker 3: Is he working now?

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Speaker 4: He has his own business so he can make up

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Speaker 4: his own hours. He really loves that and that's what

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Speaker 4: he's really passionate about. But I don't think he would

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Speaker 4: be able to have a corporate job at this point.

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Speaker 5: And he did so right after law school.

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Speaker 4: He did have a corporate job and it was fine,

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Speaker 4: But today I don't think it's possible.

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Speaker 1: Can you take us through a typical day of what

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Speaker 1: your life is like now and what the two of

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Speaker 1: you do, and how old are you both?

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Speaker 4: We are both thirty three. I'll wake up around probably seven.

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Speaker 4: He's usually asleep until I would say ten or eleven,

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Speaker 4: and I'll just start my day. I have a full

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Speaker 4: time job, so I'll work throughout the day and he'll

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Speaker 4: wake up later and he will try and work and

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Speaker 4: get through his day sometimes he can. And then when

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Speaker 4: I'm finished, we'll hang out, I'll cook dinner, we'll spend

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Speaker 4: some time together.

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Speaker 5: And then as I.

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Speaker 4: Am ready to go to bed, he's like awaken in

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Speaker 4: pain and working through something or watching a movie, sort

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Speaker 4: of trying to get his mind off of it. And

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Speaker 4: then if it's really bad, sometimes he'll wake me up

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Speaker 4: in the middle of the night because he's been up

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Speaker 4: for so long. He's like starving and needs a snack

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Speaker 4: or something, and he can't get downstairs, then he'll ask

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Speaker 4: me for help, or sometimes he'll like wake me up

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Speaker 4: just from sort of like almost like a panic attack,

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Speaker 4: just for like a hug or something to like bring

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Speaker 4: him down, and then we kind of startle over again.

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Speaker 4: Whenever we try and go see friends, I never expect

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Speaker 4: that he will come.

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Speaker 5: It's always up in the air.

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Speaker 4: Or if we have an activity planned, we have to

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Speaker 4: make sure that it's not too late in the evening,

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Speaker 4: or like sometimes we have to make sure that we

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Speaker 4: can cancel things just because we know that it may

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Speaker 4: or may not happen.

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Speaker 1: How has the community around you, your circle of friends

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Speaker 1: responded to what's going on.

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Speaker 4: Most of my friends are still in New York, so

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Speaker 4: whenever I go home, they don't usually think that he'll

247
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Speaker 4: be there with me, and they're supportive as they can

248
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Speaker 4: be sort of from a distance.

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Speaker 5: Same with both of our parents. And then I.

250
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Speaker 4: Think, here, we don't really have close enough friends to

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Speaker 4: be able to have that conversation with them. My job

252
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Speaker 4: definitely knows what's going on, and so if I need

253
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Speaker 4: to take the time, they're very flexible and supportive as

254
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Speaker 4: much as possible.

255
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Speaker 3: Do you have a sense in terms of the disease

256
00:14:23,239 --> 00:14:26,959
Speaker 3: progression where he's at, what his prognosis.

257
00:14:26,359 --> 00:14:29,799
Speaker 5: Is, No, not at all. The doctors don't really know,

258
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Speaker 5: and there's a lot of.

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Speaker 4: New medications coming out and new therapies, so I think

260
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Speaker 4: it's sort of changing. It's not really something that we've

261
00:14:39,399 --> 00:14:44,239
Speaker 4: talked about deeply. It has been a hard conversation to

262
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Speaker 4: talk about options because he very strongly believes that it's

263
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Speaker 4: entirely his decision.

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Speaker 5: And that's, you.

265
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Speaker 4: Know, rightfully, So what is his decision whether or not

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Speaker 4: to explore any new medications, whether or not to explore

267
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Speaker 4: any new therapies things like that. Sometimes, like I think

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00:15:04,719 --> 00:15:06,799
Speaker 4: he sort of should be doing more.

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Speaker 1: What do you think he should be doing?

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Speaker 4: Well, there are a couple of new therapies and I

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Speaker 4: think he should explore them further. There was this one

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Speaker 4: supplement that his doctor recommended that's supposed to help, but

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Speaker 4: it hasn't been taking it in the quantity that he's

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Speaker 4: supposed to be and so it wasn't really helping.

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Speaker 1: Do you know why he wasn't taking it? And I don't.

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Speaker 5: I try to understand, and I just I don't.

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Speaker 1: So what happens when you ask.

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Speaker 4: Him he kind of brushes it off. And just says

279
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Speaker 4: that he will or he forgets or something, and then

280
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Speaker 4: I try and remind him any things. I'm putting too

281
00:15:47,719 --> 00:15:51,319
Speaker 4: much emphasis onto this supplement, and it's supposed to.

282
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Speaker 5: Have some benefits for sickle cell patients.

283
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Speaker 1: You know what I'm hearing is that when you say

284
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Speaker 1: he brushes it off, I think you both brush it off,

285
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Speaker 1: because what happens is you're talking about take the supplement,

286
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Speaker 1: don't take the supplement, as opposed to what's going on

287
00:16:07,119 --> 00:16:10,359
Speaker 1: emotionally for both of you. Much easier. By the way,

288
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Speaker 1: it's very common for people, especially in this situation, to say,

289
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Speaker 1: let's talk about treatment options, and let's talk about your pain,

290
00:16:16,719 --> 00:16:18,159
Speaker 1: and let me get you snack in the middle of

291
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Speaker 1: the night, as opposed to what is this experience like

292
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Speaker 1: for us, not only as a married couple, but as

293
00:16:24,159 --> 00:16:28,679
Speaker 1: a young married couple, because there's something so isolating anyway

294
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Speaker 1: for a caregiver in any situation, Often the caregiver is

295
00:16:32,199 --> 00:16:36,119
Speaker 1: the last person whose needs are attended to. But when

296
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Speaker 1: you're a young couple and you watch all the other

297
00:16:38,799 --> 00:16:42,479
Speaker 1: couples your age, I think that most of what you

298
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Speaker 1: see as people in their early thirties going through early

299
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Speaker 1: stages of marriage, maybe having children, lots of career stuff

300
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Speaker 1: going on, and you guys have this other layer that's

301
00:16:54,719 --> 00:16:59,759
Speaker 1: also there, and so there's a sense of isolation, and

302
00:16:59,839 --> 00:17:02,599
Speaker 1: what happens is it gets translated into the couple. So

303
00:17:03,119 --> 00:17:05,559
Speaker 1: when he doesn't take the supplement and you say how

304
00:17:05,599 --> 00:17:08,199
Speaker 1: come you didn't take the supplement, you do come across

305
00:17:08,239 --> 00:17:11,279
Speaker 1: to him as sort of a parental figure as opposed

306
00:17:11,319 --> 00:17:15,079
Speaker 1: to a partner. For you, you say to yourself, I'm really

307
00:17:15,119 --> 00:17:17,519
Speaker 1: worried about this. He has this option here that I

308
00:17:17,559 --> 00:17:21,439
Speaker 1: think might help him, and I get really frustrated and

309
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Speaker 1: angry that he doesn't want to do it, and you

310
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Speaker 1: don't say that to him. And what he doesn't say

311
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Speaker 1: to you is I don't want to take the supplement

312
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Speaker 1: because and I wonder why you both are avoiding in

313
00:17:34,879 --> 00:17:37,999
Speaker 1: some way having the conversations, not about the what, but

314
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Speaker 1: about the why.

315
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Speaker 4: Yeah, it's hard for me because a few times that

316
00:17:41,879 --> 00:17:43,919
Speaker 4: we have tried to have this conversation we end up

317
00:17:43,919 --> 00:17:45,679
Speaker 4: in a fight, and I would just rather not bring

318
00:17:45,719 --> 00:17:47,639
Speaker 4: it up than end up fighting about it again.

319
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Speaker 3: Savannah, how much is it clear for the two of

320
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Speaker 3: you that the sickle cell impacts you very much as well?

321
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Speaker 3: Have you told him the extent of the effect that

322
00:18:00,399 --> 00:18:00,999
Speaker 3: it has on you.

323
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Speaker 5: I think so, I actually, I don't know.

324
00:18:07,799 --> 00:18:11,079
Speaker 3: Tell us about an attempt and explained to him how

325
00:18:11,119 --> 00:18:12,039
Speaker 3: it's impacting you.

326
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Speaker 4: I guess if you put it that way, I don't

327
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Speaker 4: think I have done a very good job in trying

328
00:18:18,759 --> 00:18:22,159
Speaker 4: to It sort of comes out in other parts of conversations.

329
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Speaker 4: I think the one time that's very clear is he

330
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Speaker 4: sort of asked me how much of it was me

331
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Speaker 4: wanting him to get better versus how much me needing

332
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Speaker 4: him to get better for our sake? On like a

333
00:18:35,879 --> 00:18:37,879
Speaker 4: scale from zero to one hundred, and I think I

334
00:18:37,919 --> 00:18:40,719
Speaker 4: said it was probably like eighty to ninety percent wanting

335
00:18:40,799 --> 00:18:43,359
Speaker 4: him to get better for him, and then the rest

336
00:18:43,399 --> 00:18:46,039
Speaker 4: they'll like ten to twenty probably for us.

337
00:18:47,479 --> 00:18:51,519
Speaker 1: Why only ten to twenty for the two of you?

338
00:18:52,599 --> 00:18:54,999
Speaker 1: I think implicit in his question was how much do

339
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Speaker 1: you care about me? How much do you love me?

340
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Speaker 1: And I think that somehow in his mind, and again

341
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Speaker 1: I want to really emphasize that just in his mind,

342
00:19:04,559 --> 00:19:06,319
Speaker 1: is that he thinks that if you give a high

343
00:19:06,359 --> 00:19:07,959
Speaker 1: percentage to how much do you want me to get

344
00:19:07,959 --> 00:19:10,999
Speaker 1: better for the sake of our marriage, that somehow that

345
00:19:11,079 --> 00:19:12,759
Speaker 1: makes him less important to you.

346
00:19:13,519 --> 00:19:15,319
Speaker 5: That sounds right, or you.

347
00:19:15,279 --> 00:19:18,679
Speaker 1: Don't empathize as well as you should. And this happens

348
00:19:18,719 --> 00:19:22,719
Speaker 1: a lot with couples where somebody is really thrust into

349
00:19:22,799 --> 00:19:27,279
Speaker 1: the role of caretaker, where you forget that you're still

350
00:19:27,279 --> 00:19:32,039
Speaker 1: a married couple, right, And so this does impact both

351
00:19:32,119 --> 00:19:35,399
Speaker 1: of you, and it should because you are a couple.

352
00:19:37,879 --> 00:19:38,079
Speaker 5: Yeah.

353
00:19:38,119 --> 00:19:41,839
Speaker 4: I think the way that I'd interpreted that question was like,

354
00:19:42,639 --> 00:19:46,559
Speaker 4: if we were to say split up, would I still

355
00:19:46,599 --> 00:19:47,839
Speaker 4: want him to get better?

356
00:19:48,239 --> 00:19:49,479
Speaker 5: And of course I would.

357
00:19:49,879 --> 00:19:52,439
Speaker 4: You know, I wouldn't wish that on anyone, especially somebody

358
00:19:52,479 --> 00:19:55,079
Speaker 4: who I loved, And even if you know there was

359
00:19:55,839 --> 00:19:58,359
Speaker 4: something that we couldn't reconcile, like, I would still want

360
00:19:58,399 --> 00:19:58,999
Speaker 4: it for him.

361
00:19:59,599 --> 00:20:03,919
Speaker 1: Does he worry that you might not stick around if

362
00:20:03,919 --> 00:20:04,759
Speaker 1: this gets worse?

363
00:20:05,079 --> 00:20:07,279
Speaker 4: I think he thinks that it could be too much

364
00:20:07,319 --> 00:20:09,479
Speaker 4: for me, Like there is a possibility that it gets

365
00:20:09,519 --> 00:20:12,319
Speaker 4: to a point where I just can't handle it anymore.

366
00:20:13,279 --> 00:20:15,519
Speaker 1: Has he actually said that to you or is that

367
00:20:15,639 --> 00:20:18,479
Speaker 1: something that you're thinking he thinks he.

368
00:20:18,519 --> 00:20:19,199
Speaker 5: Said it before?

369
00:20:20,959 --> 00:20:25,359
Speaker 3: Because I think that that question actually was a fear

370
00:20:25,679 --> 00:20:29,239
Speaker 3: on the one hand, and on the other hand, giving

371
00:20:29,279 --> 00:20:32,999
Speaker 3: you an opportunity to open the door and say, yes,

372
00:20:33,079 --> 00:20:34,839
Speaker 3: I want you to get better, but I also want

373
00:20:34,839 --> 00:20:37,359
Speaker 3: to talk about what it's doing to us. In other words,

374
00:20:37,399 --> 00:20:40,359
Speaker 3: I do think that he might be fishing a little

375
00:20:40,359 --> 00:20:43,439
Speaker 3: bit for you to bring up your part of this

376
00:20:44,239 --> 00:20:47,519
Speaker 3: more than you've been willing to do. And I know

377
00:20:47,599 --> 00:20:49,919
Speaker 3: that a lot of people when they're in his situation

378
00:20:50,759 --> 00:20:54,279
Speaker 3: really go between feeling I need this help and feeling

379
00:20:54,319 --> 00:20:56,479
Speaker 3: guilt on the one hand, and then feeling like, but

380
00:20:56,559 --> 00:20:58,159
Speaker 3: if she tells me this is really hard for her,

381
00:20:58,199 --> 00:20:59,959
Speaker 3: that'll really be too much for me. I want to know,

382
00:20:59,999 --> 00:21:02,119
Speaker 3: but I don't want to hear it kind of feeling.

383
00:21:02,159 --> 00:21:05,119
Speaker 3: And I'm wondering if he's in that boat a little bit.

384
00:21:05,439 --> 00:21:07,039
Speaker 5: Yeah, that definitely sounds possible.

385
00:21:08,639 --> 00:21:11,079
Speaker 3: So then you're sharing him by not wanting to burden

386
00:21:11,159 --> 00:21:16,119
Speaker 3: him by telling him how much it's impacting you. And

387
00:21:16,159 --> 00:21:20,239
Speaker 3: I'm just not sure that, given what you wrote and

388
00:21:20,279 --> 00:21:24,919
Speaker 3: how you're feeling, whether that's manageable for much longer for you.

389
00:21:25,319 --> 00:21:27,359
Speaker 3: I'm not sure you have the option to spare him

390
00:21:27,399 --> 00:21:31,879
Speaker 3: that for much longer. And this is in part why

391
00:21:31,879 --> 00:21:34,079
Speaker 3: you wrote to us being able to talk to him

392
00:21:34,119 --> 00:21:37,839
Speaker 3: more about Look, this is really hard for me, and

393
00:21:38,079 --> 00:21:40,999
Speaker 3: I need us to talk. How much are you there?

394
00:21:43,839 --> 00:21:44,319
Speaker 5: I don't know.

395
00:21:46,319 --> 00:21:48,959
Speaker 3: You don't know if you're ready for that. What's your fear.

396
00:21:50,159 --> 00:21:53,399
Speaker 4: I'm definitely scared that our marriage could fall apart, and

397
00:21:53,479 --> 00:21:54,919
Speaker 4: I certainly don't want it to.

398
00:21:55,639 --> 00:22:00,839
Speaker 5: I just don't know what to do that will help

399
00:22:01,199 --> 00:22:02,679
Speaker 5: both of us without making.

400
00:22:02,439 --> 00:22:06,199
Speaker 4: It like this is his problem, because I I don't

401
00:22:06,239 --> 00:22:09,239
Speaker 4: want it to feel that way. Right Like we got married,

402
00:22:09,359 --> 00:22:11,839
Speaker 4: you're in this together. I just want to know what

403
00:22:11,919 --> 00:22:13,919
Speaker 4: more either I can do or both of us can

404
00:22:13,959 --> 00:22:19,239
Speaker 4: do in order to have it be something that isn't

405
00:22:19,279 --> 00:22:21,759
Speaker 4: sort of always in everything.

406
00:22:22,679 --> 00:22:25,479
Speaker 1: It is in everything in the sense of this is

407
00:22:25,559 --> 00:22:28,199
Speaker 1: going on and it doesn't go away, and nobody gets

408
00:22:28,199 --> 00:22:30,439
Speaker 1: a night off from the fact that he has sickle

409
00:22:30,479 --> 00:22:33,879
Speaker 1: cell disease. But what's also going on at the same

410
00:22:33,919 --> 00:22:36,439
Speaker 1: time that's not going away is you guys are a couple.

411
00:22:37,359 --> 00:22:41,959
Speaker 1: And so the thing that's going to be helpful for

412
00:22:41,999 --> 00:22:44,319
Speaker 1: the two of you is what is the nature of

413
00:22:44,319 --> 00:22:47,199
Speaker 1: the connection between you guys as a married couple, even

414
00:22:47,239 --> 00:22:50,479
Speaker 1: though you have this challenge in your marriage, and I

415
00:22:50,559 --> 00:22:52,319
Speaker 1: is a challenge in your marriage because it's a challenge

416
00:22:52,319 --> 00:22:56,599
Speaker 1: for both of you. Yes, he suffers more, he has

417
00:22:56,759 --> 00:22:59,879
Speaker 1: the excruciating pain he has, the anemia and the fatigue

418
00:23:00,519 --> 00:23:01,959
Speaker 1: he has. And I don't know if you two have

419
00:23:02,039 --> 00:23:07,399
Speaker 1: talked about this a shortened life expectancy, and so how

420
00:23:07,399 --> 00:23:09,759
Speaker 1: do you talk about the fact that there's a lot

421
00:23:09,799 --> 00:23:12,759
Speaker 1: going on in your marriage that's unrelated to this? I hope,

422
00:23:12,839 --> 00:23:15,599
Speaker 1: but I don't know how much is. And then this

423
00:23:15,719 --> 00:23:18,439
Speaker 1: is also happening, and I think it's taking up so

424
00:23:18,679 --> 00:23:21,839
Speaker 1: much space because no one's talking about it. Usually the

425
00:23:21,879 --> 00:23:25,399
Speaker 1: things that we don't talk about because we feel like

426
00:23:25,599 --> 00:23:27,919
Speaker 1: they're going to take up so much space, we actually

427
00:23:27,959 --> 00:23:31,279
Speaker 1: make them take up more space by not talking about them.

428
00:23:31,839 --> 00:23:33,999
Speaker 1: You know that line when you get married in sickness

429
00:23:33,999 --> 00:23:37,599
Speaker 1: and in health. That line was especially relevant to the

430
00:23:37,639 --> 00:23:42,759
Speaker 1: two of you when you think about how you imagined

431
00:23:42,799 --> 00:23:45,159
Speaker 1: your marriage would go at the moment that you recited

432
00:23:45,199 --> 00:23:48,519
Speaker 1: those vows versus how it's going now. Can you tell

433
00:23:48,559 --> 00:23:50,879
Speaker 1: me what the difference is?

434
00:23:51,679 --> 00:23:56,319
Speaker 4: In my mind, it was, we're already doing the sickness thing,

435
00:23:56,439 --> 00:24:02,159
Speaker 4: and it's fine. We both sort of make these sacrifices

436
00:24:02,199 --> 00:24:03,999
Speaker 4: here and there, right like he misses out on things

437
00:24:04,039 --> 00:24:07,199
Speaker 4: because he feels it, and then I will miss out

438
00:24:07,239 --> 00:24:09,119
Speaker 4: on things like let's say we've had plans to go,

439
00:24:09,119 --> 00:24:11,799
Speaker 4: so then I'll just you know, I'll miss out occasionally,

440
00:24:11,799 --> 00:24:14,159
Speaker 4: but then I can be with him and support him.

441
00:24:14,879 --> 00:24:17,799
Speaker 4: The flip side is if I really wanted to do

442
00:24:17,839 --> 00:24:20,559
Speaker 4: something or go somewhere whatever without him, He's not the

443
00:24:20,639 --> 00:24:22,999
Speaker 4: kind of person who will ask me to stay.

444
00:24:23,079 --> 00:24:23,839
Speaker 5: He'll tell me to.

445
00:24:23,799 --> 00:24:26,519
Speaker 4: Go and you know, do what I wanted to do,

446
00:24:26,599 --> 00:24:28,919
Speaker 4: and he'll just deal with it on his own. And

447
00:24:28,959 --> 00:24:31,679
Speaker 4: that's kind of what I expected, Like, that's sort of

448
00:24:31,679 --> 00:24:35,079
Speaker 4: what we were doing before, and that's what I anticipated

449
00:24:35,079 --> 00:24:36,639
Speaker 4: the future would be like.

450
00:24:37,839 --> 00:24:41,399
Speaker 1: When you did your research on sickle cell disease, one

451
00:24:41,399 --> 00:24:45,279
Speaker 1: of the things that's very much out there is what

452
00:24:45,319 --> 00:24:49,479
Speaker 1: the symptoms are, what they can become. And again this

453
00:24:49,559 --> 00:24:52,639
Speaker 1: question of average life expectancy, which I think for sickle

454
00:24:52,679 --> 00:24:57,479
Speaker 1: cell disease is quite young. Did you google that?

455
00:24:58,639 --> 00:25:04,559
Speaker 4: I did, but it was like, well, that's everyone else,

456
00:25:05,079 --> 00:25:07,959
Speaker 4: that's not him. I think he said that it runs

457
00:25:07,959 --> 00:25:09,959
Speaker 4: in his family, and so he said other families who

458
00:25:09,999 --> 00:25:12,839
Speaker 4: have lived full lives and till.

459
00:25:12,799 --> 00:25:13,999
Speaker 5: They were much older.

460
00:25:14,039 --> 00:25:18,279
Speaker 4: And so he's not really worried about this shortened life span.

461
00:25:18,839 --> 00:25:21,919
Speaker 5: So I shouldn't worry about the shortened life span.

462
00:25:23,279 --> 00:25:26,959
Speaker 3: You mentioned earlier. That you're worried that talking to him

463
00:25:26,999 --> 00:25:29,839
Speaker 3: about things in terms of how they impact you and

464
00:25:29,879 --> 00:25:33,199
Speaker 3: the marriage might cause things to unravel and cause a

465
00:25:33,239 --> 00:25:37,799
Speaker 3: big fight. Now, you seem to love him, you seem

466
00:25:37,839 --> 00:25:40,719
Speaker 3: to want to figure it out. In fact, you seem

467
00:25:40,759 --> 00:25:42,079
Speaker 3: a little too much to want to figure it out

468
00:25:42,119 --> 00:25:45,519
Speaker 3: by yourself really without him as much, and to spare

469
00:25:45,559 --> 00:25:49,359
Speaker 3: him more. But you seem to be worried that he's

470
00:25:49,399 --> 00:25:52,719
Speaker 3: going to have the bad reaction to that conversation. He's

471
00:25:52,759 --> 00:25:55,799
Speaker 3: going to have a difficult time talking about how this

472
00:25:55,879 --> 00:26:00,039
Speaker 3: impacts you, perhaps how this impacts the marriage. Why are

473
00:26:00,039 --> 00:26:01,839
Speaker 3: you worried about that? What have you heard from him

474
00:26:01,879 --> 00:26:04,959
Speaker 3: that indicates that he will have a hard time having

475
00:26:04,999 --> 00:26:10,359
Speaker 3: that kind of conversation To give space for your experience

476
00:26:10,839 --> 00:26:13,079
Speaker 3: side by side with his, I think.

477
00:26:12,919 --> 00:26:18,119
Speaker 4: It's like the stress of the conversation puts his body

478
00:26:18,159 --> 00:26:21,599
Speaker 4: into stress, and that causes sickle cell pain.

479
00:26:22,079 --> 00:26:25,079
Speaker 3: How quickly, immediately, as soon as you start the conversation.

480
00:26:24,719 --> 00:26:27,879
Speaker 4: No, just as it goes on, and if it sort

481
00:26:27,879 --> 00:26:31,199
Speaker 4: of doesn't go well, then it could be a night

482
00:26:31,239 --> 00:26:33,759
Speaker 4: where he doesn't sleep or he's in so much pain

483
00:26:33,799 --> 00:26:36,359
Speaker 4: he just has to keep taking medication, and then he

484
00:26:36,399 --> 00:26:39,559
Speaker 4: doesn't sleep or does sleep throughout like half the next day,

485
00:26:39,639 --> 00:26:45,159
Speaker 4: and so the effect is so big that it's hard

486
00:26:45,239 --> 00:26:48,439
Speaker 4: sometimes to bring it up. I'm not afraid of what

487
00:26:48,519 --> 00:26:52,959
Speaker 4: he'll say, I'm afraid of what reaction his body will have.

488
00:26:54,359 --> 00:26:57,119
Speaker 3: That means you're afraid to discuss any difficult.

489
00:26:56,719 --> 00:27:00,679
Speaker 4: Topic with him, Yeah, I mean having really difficult conversations,

490
00:27:00,719 --> 00:27:03,159
Speaker 4: like I have to think about it and figure out

491
00:27:03,199 --> 00:27:05,439
Speaker 4: how to bring it up. Sometimes we have to stop

492
00:27:05,479 --> 00:27:06,879
Speaker 4: and take a break and try and bring it up

493
00:27:06,919 --> 00:27:08,079
Speaker 4: again at a later time.

494
00:27:09,519 --> 00:27:12,159
Speaker 1: Because what happens in that moment where you feel like

495
00:27:13,439 --> 00:27:17,039
Speaker 1: we need to revisit this later. Are you guys arguing

496
00:27:17,079 --> 00:27:18,759
Speaker 1: with each other? What happens?

497
00:27:19,239 --> 00:27:21,879
Speaker 4: We don't really raise our voices all that much. It's

498
00:27:21,919 --> 00:27:23,839
Speaker 4: not really how we fight. We sort of just like

499
00:27:24,199 --> 00:27:26,279
Speaker 4: we can't get through to each other. We can't explain

500
00:27:26,359 --> 00:27:29,319
Speaker 4: things in a way that the other person understands, and

501
00:27:29,359 --> 00:27:32,079
Speaker 4: so we just end up talking in circles and it

502
00:27:32,279 --> 00:27:33,279
Speaker 4: just gets frustrating.

503
00:27:35,119 --> 00:27:38,239
Speaker 1: You're worried about talking about anything that might upset him

504
00:27:38,679 --> 00:27:41,479
Speaker 1: because not only will it potentially hurt him emotionally, but

505
00:27:41,519 --> 00:27:48,479
Speaker 1: it could hurt him physically, which makes it impossible for

506
00:27:48,519 --> 00:27:53,159
Speaker 1: you to have any space at all emotionally in the couple.

507
00:27:54,479 --> 00:28:03,479
Speaker 1: I don't know that you guys can get closer if

508
00:28:04,239 --> 00:28:07,759
Speaker 1: you're living in your own silos. He's experiencing what he's experiencing,

509
00:28:07,759 --> 00:28:12,719
Speaker 1: Your experiencing what your experience and saying, but nobody's talking

510
00:28:12,759 --> 00:28:15,919
Speaker 1: about not only what's going on in the present, but

511
00:28:15,959 --> 00:28:19,119
Speaker 1: what might happen in the future. You didn't talk about

512
00:28:19,119 --> 00:28:22,079
Speaker 1: it before you got married. There was this reasurance from him, well,

513
00:28:22,119 --> 00:28:23,999
Speaker 1: everybody in my family does well with this disease, so

514
00:28:24,039 --> 00:28:25,719
Speaker 1: it's going to be okay, And you said, I guess

515
00:28:25,759 --> 00:28:28,479
Speaker 1: it'll be okay. I don't know if you ever thought

516
00:28:28,519 --> 00:28:31,479
Speaker 1: about having kids. Did you guys think about that?

517
00:28:32,479 --> 00:28:35,799
Speaker 5: We also sort of table that.

518
00:28:35,879 --> 00:28:38,239
Speaker 4: I mean, neither one of us was sure, you know,

519
00:28:38,279 --> 00:28:40,239
Speaker 4: a couple of years ago, and I think we're just

520
00:28:40,319 --> 00:28:43,039
Speaker 4: trying to figure it out if that's something that we

521
00:28:43,319 --> 00:28:44,199
Speaker 4: want to do.

522
00:28:44,719 --> 00:28:48,679
Speaker 5: In this moment. I don't know that we can give

523
00:28:48,719 --> 00:28:50,319
Speaker 5: in sort of everything.

524
00:28:51,319 --> 00:28:53,879
Speaker 1: I want to ask a different question, not whether you can,

525
00:28:54,719 --> 00:29:00,559
Speaker 1: but I want to know what it is that you want.

526
00:29:01,359 --> 00:29:01,839
Speaker 5: I don't know.

527
00:29:03,599 --> 00:29:07,199
Speaker 4: I truly didn't know a few years ago. I think

528
00:29:07,439 --> 00:29:09,679
Speaker 4: now I'm getting to the point where, like yes, I

529
00:29:09,719 --> 00:29:10,519
Speaker 4: think I do.

530
00:29:11,959 --> 00:29:13,399
Speaker 3: You do want kids?

531
00:29:13,479 --> 00:29:13,799
Speaker 5: Yeah?

532
00:29:14,479 --> 00:29:15,279
Speaker 1: Yeah.

533
00:29:15,479 --> 00:29:19,199
Speaker 3: Something that's happening, Savannah is that whenever you start thinking

534
00:29:19,239 --> 00:29:25,279
Speaker 3: about your needs and your feelings, sickle cell jumps into

535
00:29:25,319 --> 00:29:30,399
Speaker 3: that frame and blocks you from pursuing it because I

536
00:29:30,479 --> 00:29:32,919
Speaker 3: need to talk to him, but oh, that'll put him

537
00:29:33,479 --> 00:29:35,999
Speaker 3: in pain. I think I want kids, but that'll be

538
00:29:35,999 --> 00:29:38,999
Speaker 3: a lot to talk to him about. Right now, I'm

539
00:29:39,039 --> 00:29:41,479
Speaker 3: feeling that there's not enough space for me and my

540
00:29:41,559 --> 00:29:45,679
Speaker 3: feelings in this, but I can't voice that because we'll

541
00:29:45,679 --> 00:29:48,319
Speaker 3: get into an argument. And I think that fear is

542
00:29:48,319 --> 00:29:50,279
Speaker 3: a short term fear, because the fear is it'll make

543
00:29:50,319 --> 00:29:53,799
Speaker 3: him feel bad that night. But right now, what's accumulating

544
00:29:54,159 --> 00:29:56,639
Speaker 3: is all the stresses of where is she at, because

545
00:29:56,639 --> 00:29:58,519
Speaker 3: I don't know how she's, what she's feeling, and whether

546
00:29:58,559 --> 00:29:59,359
Speaker 3: she wants to be in this.

547
00:30:00,719 --> 00:30:05,159
Speaker 1: The thing about a chronic illness is that it flares

548
00:30:05,279 --> 00:30:09,319
Speaker 1: up sometimes and then things seem sort of normalish sometimes,

549
00:30:10,079 --> 00:30:12,199
Speaker 1: and you don't want to get too hopeful in the

550
00:30:12,279 --> 00:30:16,399
Speaker 1: normal moments because your guard is down, and then when

551
00:30:16,439 --> 00:30:19,119
Speaker 1: the pain starts again, then you're just drawn right back

552
00:30:19,159 --> 00:30:22,199
Speaker 1: into it. But it feels harder in some ways because

553
00:30:22,199 --> 00:30:25,799
Speaker 1: you had your hopes up. It sounds like you're just

554
00:30:25,919 --> 00:30:30,439
Speaker 1: in constant survival mode, that you're not really living because

555
00:30:30,439 --> 00:30:35,119
Speaker 1: you're just trying to survive. And the part that's missing

556
00:30:35,239 --> 00:30:38,959
Speaker 1: in this marriage right now is that you are a young,

557
00:30:38,959 --> 00:30:44,359
Speaker 1: married couple and yes, there's this big challenge that you have,

558
00:30:44,479 --> 00:30:46,799
Speaker 1: but there's so much more to this marriage than that,

559
00:30:47,519 --> 00:30:50,239
Speaker 1: and there's no room at all for that. It's like,

560
00:30:50,319 --> 00:30:52,439
Speaker 1: let's be careful about what we talk about. Let me

561
00:30:52,479 --> 00:30:54,399
Speaker 1: not burden him with what's going on in my day.

562
00:30:54,759 --> 00:30:56,679
Speaker 1: My concern about what happened with my boss or my

563
00:30:56,799 --> 00:31:00,759
Speaker 1: job or my friend might seem irrelevant to him. So

564
00:31:00,799 --> 00:31:05,599
Speaker 1: you're not really connecting at all. And there's so much

565
00:31:05,879 --> 00:31:11,199
Speaker 1: fear of talking about what's already looming so large between you.

566
00:31:11,559 --> 00:31:13,519
Speaker 1: It's not like because you're not talking about it, it's

567
00:31:13,559 --> 00:31:17,759
Speaker 1: not there. It's so there. Things like I think I

568
00:31:17,799 --> 00:31:21,959
Speaker 1: want to have kids, things like I worry about the

569
00:31:21,959 --> 00:31:25,599
Speaker 1: progression of this disease. Can we talk about what happens

570
00:31:25,639 --> 00:31:28,479
Speaker 1: if something happens where you do get very ill at

571
00:31:28,479 --> 00:31:32,599
Speaker 1: one point, we might want to get a caregiver for you.

572
00:31:32,639 --> 00:31:35,679
Speaker 1: Can we talk about how we talk about decisions around

573
00:31:35,759 --> 00:31:38,919
Speaker 1: your care and where we can have discussions about it,

574
00:31:38,959 --> 00:31:43,119
Speaker 1: even if ultimately it's your decision. Can we talk about

575
00:31:43,159 --> 00:31:45,319
Speaker 1: why you don't want to take the supplements. I just

576
00:31:45,359 --> 00:31:50,639
Speaker 1: want to understand how you think and feel about these things.

577
00:31:51,159 --> 00:31:53,119
Speaker 1: Can we talk about what happens at the doctor and

578
00:31:53,119 --> 00:31:57,919
Speaker 1: who's in those meetings and discussions, and then can we

579
00:31:57,959 --> 00:32:00,239
Speaker 1: also talk about how we can have some normalcy in

580
00:32:00,279 --> 00:32:05,119
Speaker 1: our marriage? Right? Are you guys having sex? Are you

581
00:32:05,679 --> 00:32:08,199
Speaker 1: having any kind of intimacy with each other? Are you

582
00:32:08,279 --> 00:32:12,759
Speaker 1: socializing with people when he's feeling up to it? What

583
00:32:12,879 --> 00:32:14,839
Speaker 1: do you do to have fun together? Do you have

584
00:32:14,879 --> 00:32:18,159
Speaker 1: any movie nights or date nights knowing that it might

585
00:32:18,159 --> 00:32:18,839
Speaker 1: get canceled?

586
00:32:19,559 --> 00:32:21,639
Speaker 3: Actually, I want the answers to all those questions. These

587
00:32:21,679 --> 00:32:23,759
Speaker 3: are great questions you asked Lorie. Can we pose and

588
00:32:23,799 --> 00:32:24,959
Speaker 3: just get some of those answers.

589
00:32:25,719 --> 00:32:33,799
Speaker 4: Yeah, we don't have sex very often since when probably

590
00:32:33,839 --> 00:32:35,199
Speaker 4: the last like two years.

591
00:32:35,559 --> 00:32:39,399
Speaker 3: I would say, because he's not up to it.

592
00:32:40,759 --> 00:32:42,639
Speaker 4: I think it's a combo. I think some of it

593
00:32:42,679 --> 00:32:45,119
Speaker 4: is that he's not feeling well. I think some of

594
00:32:45,119 --> 00:32:48,439
Speaker 4: it is I've just been really tired more over the

595
00:32:48,519 --> 00:32:51,319
Speaker 4: last year, I would say, And I think part of

596
00:32:51,319 --> 00:32:53,439
Speaker 4: it is I think you hit it on the head

597
00:32:53,439 --> 00:32:56,079
Speaker 4: with like we're not really connecting, and so that doesn't

598
00:32:56,119 --> 00:32:58,839
Speaker 4: really drive the want to.

599
00:33:00,279 --> 00:33:02,959
Speaker 1: Do you hold hands? Do you kiss? Do you hug

600
00:33:02,999 --> 00:33:06,879
Speaker 1: each other? So what happens when somebody initiates sex and

601
00:33:06,919 --> 00:33:08,279
Speaker 1: the other person doesn't want to.

602
00:33:09,079 --> 00:33:12,079
Speaker 5: Think there's just a lack of initiation.

603
00:33:14,119 --> 00:33:15,879
Speaker 1: So nobody's initiating.

604
00:33:16,399 --> 00:33:20,959
Speaker 3: Not often, and I'm assuming you're not talking about it.

605
00:33:21,359 --> 00:33:26,359
Speaker 5: We've tried, that's great, but who I bring it up?

606
00:33:28,159 --> 00:33:29,559
Speaker 3: And what happens in that discussion?

607
00:33:30,079 --> 00:33:33,799
Speaker 4: It usually comes up like at the end of something else.

608
00:33:33,959 --> 00:33:39,439
Speaker 4: It's never its own like topic. It's usually a you

609
00:33:39,479 --> 00:33:44,039
Speaker 4: know this was wrong, or like there's this or this,

610
00:33:44,119 --> 00:33:45,199
Speaker 4: and then also like.

611
00:33:46,999 --> 00:33:47,999
Speaker 5: We're not having sex.

612
00:33:48,479 --> 00:33:51,559
Speaker 1: So that's what we call kitchen sink fighting, where you

613
00:33:51,639 --> 00:33:53,279
Speaker 1: kind of throw in everything with the kitchen sink. So

614
00:33:53,319 --> 00:33:55,199
Speaker 1: it's like we're fighting about one thing, or we're talking

615
00:33:55,199 --> 00:33:57,559
Speaker 1: about one thing, but then let's do this laundry list

616
00:33:57,599 --> 00:33:59,839
Speaker 1: of all the other things that I'm upset about that

617
00:33:59,879 --> 00:34:00,759
Speaker 1: we haven't talked about.

618
00:34:01,839 --> 00:34:04,079
Speaker 3: But that's not as sincere if it's actually have a discussion,

619
00:34:04,119 --> 00:34:05,599
Speaker 3: right if you just tag it on at the end.

620
00:34:05,639 --> 00:34:07,879
Speaker 3: He also understands that he's not going to sit down

621
00:34:07,879 --> 00:34:09,319
Speaker 3: and Okay, let's sit down and talk about that.

622
00:34:09,399 --> 00:34:13,799
Speaker 1: Then, so you've barely had sex for two years. What

623
00:34:13,999 --> 00:34:17,159
Speaker 1: prevents you from talking with him about that? You're worried

624
00:34:17,199 --> 00:34:18,679
Speaker 1: that it's going to upset him and then he's going

625
00:34:18,759 --> 00:34:21,199
Speaker 1: to have a flare up of his symptoms.

626
00:34:22,399 --> 00:34:24,519
Speaker 4: Yeah, I just don't know how to bring it up.

627
00:34:24,519 --> 00:34:25,799
Speaker 4: I don't know when to bring it up. I don't

628
00:34:25,839 --> 00:34:29,119
Speaker 4: know how to have the conversation. I need to do

629
00:34:29,199 --> 00:34:32,359
Speaker 4: something about it, and like that kind of scares me.

630
00:34:33,919 --> 00:34:36,839
Speaker 1: Let me just backtrack for a second. If you were

631
00:34:36,879 --> 00:34:40,799
Speaker 1: in this marriage with Sid and he didn't have sickle

632
00:34:40,879 --> 00:34:45,199
Speaker 1: cell disease and you weren't having sex, how do you

633
00:34:45,199 --> 00:34:46,199
Speaker 1: think you might bring it up?

634
00:34:48,079 --> 00:34:48,559
Speaker 5: I don't know.

635
00:34:49,719 --> 00:34:54,639
Speaker 1: Right, So, this is what I'm starting to suspect. So

636
00:34:54,799 --> 00:34:57,719
Speaker 1: much of what might have been sort of typical marital

637
00:34:57,799 --> 00:35:01,719
Speaker 1: issues between the two of you get tossed into this

638
00:35:01,759 --> 00:35:06,079
Speaker 1: bucket of well, we can't talk about that because Sid

639
00:35:06,119 --> 00:35:10,479
Speaker 1: is sick. But I think that even if he weren't sick,

640
00:35:10,879 --> 00:35:16,759
Speaker 1: maybe the two of you don't have the practice talking

641
00:35:16,799 --> 00:35:21,239
Speaker 1: about some of these delicate things with each other. It's

642
00:35:21,239 --> 00:35:23,439
Speaker 1: so easy to say, well, we're not talking about it

643
00:35:23,479 --> 00:35:26,799
Speaker 1: because of what happens with the illness when we start

644
00:35:26,839 --> 00:35:29,399
Speaker 1: talking about things, but a lot of what you're talking

645
00:35:29,479 --> 00:35:33,879
Speaker 1: about are actually kind of universal couple's issues. And then

646
00:35:34,039 --> 00:35:35,839
Speaker 1: later on top of that is the fact that he's sick,

647
00:35:37,039 --> 00:35:40,599
Speaker 1: but things like, how do we talk about our needs

648
00:35:40,719 --> 00:35:43,999
Speaker 1: in the relationship? What happens when one person's needs seem

649
00:35:44,039 --> 00:35:45,799
Speaker 1: to be bigger or there isn't really space for the

650
00:35:45,839 --> 00:35:49,639
Speaker 1: other person's needs. What happens when we have differences of

651
00:35:49,679 --> 00:35:53,519
Speaker 1: opinion about things big things in the marriage. What happens

652
00:35:53,559 --> 00:35:59,599
Speaker 1: when the intimacy declines because we're not connecting. Any couple

653
00:35:59,919 --> 00:36:03,999
Speaker 1: listening to this is probably nodding right now, saying, oh, yeah,

654
00:36:04,999 --> 00:36:09,119
Speaker 1: those issues are really common. But when you start to

655
00:36:09,399 --> 00:36:13,839
Speaker 1: make the excuse that we're not talking about that because

656
00:36:14,199 --> 00:36:18,519
Speaker 1: of Sid's illness, now you have this concrete reason that

657
00:36:18,599 --> 00:36:21,479
Speaker 1: you can't do it. What we're trying to say here

658
00:36:21,679 --> 00:36:25,799
Speaker 1: is that these parallel tracks don't need to be so

659
00:36:25,959 --> 00:36:28,919
Speaker 1: parallel of the illness in the marriage that they're actually

660
00:36:28,999 --> 00:36:33,279
Speaker 1: quite intertwined. Every marriage has its stuff. This marriage happens

661
00:36:33,279 --> 00:36:35,839
Speaker 1: to have this as its stuff, but it also has

662
00:36:35,879 --> 00:36:38,119
Speaker 1: a lot of other stuff that lots of other marriages have,

663
00:36:39,879 --> 00:36:43,479
Speaker 1: and It's not just that he doesn't want to talk

664
00:36:43,479 --> 00:36:45,999
Speaker 1: about it, it's that I have trouble talking about it,

665
00:36:49,119 --> 00:36:50,679
Speaker 1: and so I want to know what the fear is.

666
00:36:50,719 --> 00:36:53,559
Speaker 1: If the illness weren't there, what would be your fear

667
00:36:53,559 --> 00:36:56,839
Speaker 1: of saying to your husband, Hey, you know we're not

668
00:36:56,919 --> 00:36:59,519
Speaker 1: having sex and I want to talk about that with you.

669
00:37:01,679 --> 00:37:02,119
Speaker 5: I don't know.

670
00:37:02,759 --> 00:37:05,359
Speaker 4: The first couple of years of our relationship, we just

671
00:37:05,839 --> 00:37:08,239
Speaker 4: seem to always be on the same page about everything,

672
00:37:08,759 --> 00:37:13,159
Speaker 4: and so it was easy. Nothing big ever really came up.

673
00:37:13,959 --> 00:37:16,559
Speaker 4: I don't know how to bring it up. I don't

674
00:37:16,559 --> 00:37:18,479
Speaker 4: know how to say it so that it doesn't like

675
00:37:18,599 --> 00:37:19,799
Speaker 4: offend him.

676
00:37:20,839 --> 00:37:23,079
Speaker 1: You say you were on the same page about everything

677
00:37:23,119 --> 00:37:26,599
Speaker 1: in the first couple of years of your relationship, but

678
00:37:26,639 --> 00:37:28,279
Speaker 1: there are things that come up when you talk about

679
00:37:28,319 --> 00:37:33,359
Speaker 1: the future, things like do we both want kids? You're

680
00:37:33,519 --> 00:37:36,359
Speaker 1: both in your thirties now, what do you think is

681
00:37:36,399 --> 00:37:38,119
Speaker 1: going to happen if you never bring this up?

682
00:37:40,239 --> 00:37:41,759
Speaker 5: We will never have kids?

683
00:37:42,559 --> 00:37:44,159
Speaker 1: And what do you think that's going to do for

684
00:37:44,239 --> 00:37:46,079
Speaker 1: you in terms of your future? How do you think

685
00:37:46,119 --> 00:37:48,679
Speaker 1: you're going to feel about that later knowing that you

686
00:37:48,719 --> 00:37:50,119
Speaker 1: never brought it up, So it would be one thing

687
00:37:50,159 --> 00:37:52,919
Speaker 1: if you brought it up, you talked about it, you

688
00:37:52,959 --> 00:37:56,439
Speaker 1: came to some place of peace with it together. I'm

689
00:37:56,479 --> 00:37:58,439
Speaker 1: trying to help you think about what might happen if

690
00:37:58,519 --> 00:38:02,919
Speaker 1: you never bring it up and you don't have kids,

691
00:38:02,999 --> 00:38:06,119
Speaker 1: even though your desire is to have kids.

692
00:38:06,959 --> 00:38:12,319
Speaker 4: I mean, there's like regret and resentment that would probably happen.

693
00:38:14,759 --> 00:38:16,839
Speaker 3: You know, what would happen on his end, which is

694
00:38:16,879 --> 00:38:21,039
Speaker 3: already happening. Because people who have illnesses which require their

695
00:38:21,079 --> 00:38:27,999
Speaker 3: spouse to be caretakers feel guilty a lot, feel worried

696
00:38:28,239 --> 00:38:31,799
Speaker 3: and fearful about their own futures a lot. And sometimes

697
00:38:31,839 --> 00:38:34,079
Speaker 3: it's so paralyzing they don't even want to deal with it.

698
00:38:34,119 --> 00:38:37,679
Speaker 3: But it's there and it's hovering, And if you don't

699
00:38:37,719 --> 00:38:42,999
Speaker 3: talk about it together, then he can't express any of

700
00:38:43,039 --> 00:38:45,799
Speaker 3: that either. And I think it's going to be very

701
00:38:45,799 --> 00:38:48,279
Speaker 3: difficult for you to talk about kids. It's going to

702
00:38:48,279 --> 00:38:50,519
Speaker 3: be very difficult for you to talk about sex. It's

703
00:38:50,519 --> 00:38:52,199
Speaker 3: going to be very difficult for you to talk about

704
00:38:52,239 --> 00:38:56,199
Speaker 3: anything unless you can first learn to talk about sickle

705
00:38:56,239 --> 00:39:00,839
Speaker 3: cell in a very open, matter of fact way. I'm

706
00:39:00,839 --> 00:39:03,759
Speaker 3: not talking about just the big discussions or fears about

707
00:39:03,799 --> 00:39:06,639
Speaker 3: the future. I mean, on the day to day, not

708
00:39:06,879 --> 00:39:10,039
Speaker 3: just transactionally, but what the impact is. So you can't

709
00:39:10,079 --> 00:39:12,439
Speaker 3: go to this thing. You understand it's not his fault,

710
00:39:12,479 --> 00:39:14,919
Speaker 3: of course, but it's disappointing. Are you allowed to be upset?

711
00:39:14,919 --> 00:39:17,399
Speaker 3: Can you be open about the frustrations that you might

712
00:39:17,639 --> 00:39:20,519
Speaker 3: feel in moments like that? If these really fearful? Like

713
00:39:20,559 --> 00:39:22,239
Speaker 3: what if this just gets worse? What if I can't

714
00:39:22,239 --> 00:39:25,199
Speaker 3: do anything? Is he allowed to express that? Are you

715
00:39:25,279 --> 00:39:28,559
Speaker 3: allowed to express that that? You really need to be

716
00:39:28,599 --> 00:39:30,399
Speaker 3: able to talk about the elephant in the room in

717
00:39:30,399 --> 00:39:35,399
Speaker 3: a much more open way. Are you willing to do that?

718
00:39:37,639 --> 00:39:39,999
Speaker 5: Yeah? Beyond like just wanting to, like, I think we

719
00:39:40,119 --> 00:39:43,719
Speaker 5: need to, you know, I think in order to be

720
00:39:43,839 --> 00:39:46,759
Speaker 5: able to get to anything else, and as you said,

721
00:39:46,759 --> 00:39:48,719
Speaker 5: like get closer, we have to be able to have

722
00:39:48,759 --> 00:39:52,599
Speaker 5: the conversation and address it in a way that's meaningful

723
00:39:52,679 --> 00:39:58,439
Speaker 5: for the both of us in order to have a relationship,

724
00:39:58,639 --> 00:39:59,439
Speaker 5: and a good one at that.

725
00:40:01,159 --> 00:40:05,599
Speaker 1: Savannah, if you weren't worried about his reaction, and you

726
00:40:05,639 --> 00:40:12,879
Speaker 1: were being truly open and on with yourself about how

727
00:40:12,959 --> 00:40:16,799
Speaker 1: you feel about what's going on right now, what would

728
00:40:16,799 --> 00:40:17,279
Speaker 1: you say?

729
00:40:20,319 --> 00:40:21,119
Speaker 5: I think that.

730
00:40:23,639 --> 00:40:27,559
Speaker 4: Maybe what it would ultimately feel is that like we

731
00:40:28,159 --> 00:40:33,199
Speaker 4: sort of aren't on the same page. You know, he

732
00:40:33,279 --> 00:40:37,519
Speaker 4: wants to handle things his way and believes that he

733
00:40:38,959 --> 00:40:42,479
Speaker 4: is in full control and he needs to do it

734
00:40:42,519 --> 00:40:44,999
Speaker 4: on his own, and he can't really share that.

735
00:40:45,399 --> 00:40:47,319
Speaker 5: And I don't know that.

736
00:40:50,279 --> 00:40:54,999
Speaker 4: I can be in a place where that part isn't shared.

737
00:40:56,399 --> 00:41:00,679
Speaker 1: Okay, so you want to include it? Can you fill

738
00:41:00,679 --> 00:41:05,279
Speaker 1: in these sentences? I'm scared because.

739
00:41:07,359 --> 00:41:14,319
Speaker 5: I'm scared because I think we may end up just.

740
00:41:16,999 --> 00:41:21,999
Speaker 4: Wanting completely different things.

741
00:41:24,439 --> 00:41:35,639
Speaker 6: I'm overwhelmed by I'm overwhelmed by the gravity of our

742
00:41:35,999 --> 00:41:40,119
Speaker 6: current situation and having to deal with it.

743
00:41:42,799 --> 00:41:44,399
Speaker 1: I feel alone when.

744
00:41:46,879 --> 00:41:54,159
Speaker 5: I feel alone almost all the time.

745
00:41:58,599 --> 00:42:02,239
Speaker 3: I want to point out that when you feel alone

746
00:42:02,799 --> 00:42:08,319
Speaker 3: almost all the time, it is very natural to anticipate

747
00:42:09,079 --> 00:42:14,159
Speaker 3: that SID won't respond well when you talk to him,

748
00:42:14,199 --> 00:42:16,999
Speaker 3: because the way you envision those conversations is you end

749
00:42:17,119 --> 00:42:19,639
Speaker 3: up alone at the end of them, and if it

750
00:42:19,639 --> 00:42:21,639
Speaker 3: could be paralyzing.

751
00:42:23,279 --> 00:42:26,399
Speaker 1: And the other thing is that I think a lot

752
00:42:26,439 --> 00:42:30,039
Speaker 1: of young couples aren't forced to talk about the hard

753
00:42:30,079 --> 00:42:34,919
Speaker 1: things the way you, as a young couple are, And

754
00:42:34,959 --> 00:42:37,879
Speaker 1: on the one hand, that might feel overwhelming, but on

755
00:42:37,919 --> 00:42:42,639
Speaker 1: the other hand, it gives you something that other couples

756
00:42:42,679 --> 00:42:46,759
Speaker 1: don't have. It allows you to become even more emotionally

757
00:42:46,799 --> 00:42:50,999
Speaker 1: intimate in ways that other couples your age maybe don't

758
00:42:50,999 --> 00:42:55,039
Speaker 1: have to because they're not forced to have these harder

759
00:42:55,079 --> 00:42:57,919
Speaker 1: conversations about who are we to each other, and what

760
00:42:57,999 --> 00:43:00,879
Speaker 1: is our future like, and what happens when we deal

761
00:43:00,879 --> 00:43:04,239
Speaker 1: with a crisis together of this magnitude, and how do

762
00:43:04,279 --> 00:43:08,159
Speaker 1: we get both of our needs met? In this way?

763
00:43:08,199 --> 00:43:10,759
Speaker 1: This could do one of two things for the two

764
00:43:10,799 --> 00:43:15,159
Speaker 1: of you. It could put you guys in a place

765
00:43:15,159 --> 00:43:17,119
Speaker 1: where you're both not willing to talk about it, and

766
00:43:17,159 --> 00:43:19,759
Speaker 1: then you're going to both feel isolated and alone. Or

767
00:43:19,799 --> 00:43:22,079
Speaker 1: we hope it has the opposite effect, which is that

768
00:43:22,239 --> 00:43:26,359
Speaker 1: it creates a kind of infrastructure and strength and resilience

769
00:43:26,799 --> 00:43:30,239
Speaker 1: to the relationship that makes you so much closer than

770
00:43:30,279 --> 00:43:32,039
Speaker 1: maybe you or nearly would have been at the stage

771
00:43:32,079 --> 00:43:32,879
Speaker 1: for a relationship.

772
00:43:33,359 --> 00:43:35,519
Speaker 3: I was thinking when you were just saying that when

773
00:43:35,559 --> 00:43:38,479
Speaker 3: I have a couple that I'm working with who are

774
00:43:38,559 --> 00:43:43,359
Speaker 3: young and who have had to deal with extraordinary stresses

775
00:43:43,679 --> 00:43:47,079
Speaker 3: or difficult events, the first thing I say to them

776
00:43:47,919 --> 00:43:49,999
Speaker 3: is you have to frame it as we are in

777
00:43:50,039 --> 00:43:53,639
Speaker 3: a really challenging situation that will require us to extend

778
00:43:54,319 --> 00:43:58,159
Speaker 3: ourselves to the kinds of emotional discomfort we ordinarily would

779
00:43:58,199 --> 00:44:03,959
Speaker 3: not have to experience. So we can't just go by

780
00:44:03,999 --> 00:44:07,399
Speaker 3: our regular auto pilot. Here, we actually have to pause

781
00:44:08,039 --> 00:44:08,999
Speaker 3: and steer together.

782
00:44:16,439 --> 00:44:20,839
Speaker 1: So, Savannah, what really struck us was when I asked

783
00:44:20,839 --> 00:44:23,559
Speaker 1: you to finish the sentence I feel alone, when you

784
00:44:23,679 --> 00:44:29,519
Speaker 1: answered with most of the time, and in general, caregivers

785
00:44:29,559 --> 00:44:33,519
Speaker 1: are so focused on taking care of someone else that

786
00:44:33,559 --> 00:44:38,599
Speaker 1: they end up feeling very alone. And you need support too,

787
00:44:38,719 --> 00:44:42,159
Speaker 1: And you really need support from people who understand what

788
00:44:42,199 --> 00:44:46,519
Speaker 1: you're going through. And your friends who are married in

789
00:44:46,559 --> 00:44:48,679
Speaker 1: their early thirties are going to have a very different

790
00:44:48,719 --> 00:44:52,679
Speaker 1: experience than you're having right now. So we'd like you

791
00:44:52,759 --> 00:44:59,199
Speaker 1: to find a support group specifically for couples where somebody

792
00:44:59,239 --> 00:45:03,159
Speaker 1: is affected by sickle cell disease. And we think that

793
00:45:03,199 --> 00:45:06,439
Speaker 1: not only will that help you to be able to

794
00:45:06,479 --> 00:45:09,039
Speaker 1: talk about some of the things that are really hard

795
00:45:09,079 --> 00:45:12,639
Speaker 1: to tell talk about, but it'll also give you a

796
00:45:12,719 --> 00:45:17,559
Speaker 1: model of how other people really live and live well

797
00:45:18,519 --> 00:45:23,439
Speaker 1: with something so challenging. When you talked about kids and

798
00:45:23,479 --> 00:45:25,399
Speaker 1: you thought, well, I just won't bring it up because

799
00:45:25,439 --> 00:45:29,239
Speaker 1: it doesn't seem possible, you will probably see models of

800
00:45:29,359 --> 00:45:33,439
Speaker 1: people who have kids, and you'll see how they do it.

801
00:45:33,639 --> 00:45:35,559
Speaker 1: If you decide not to have kids, you'll see models

802
00:45:35,559 --> 00:45:38,719
Speaker 1: of that as well. All of the things that you're

803
00:45:38,759 --> 00:45:41,679
Speaker 1: struggling with are so specific to I'm married to somebody

804
00:45:41,679 --> 00:45:44,719
Speaker 1: who has sickle cell disease that you really need to

805
00:45:44,759 --> 00:45:49,039
Speaker 1: find people who understand who can provide that community for you.

806
00:45:49,759 --> 00:45:52,159
Speaker 1: As a start. You're also going to have to talk

807
00:45:52,559 --> 00:45:56,519
Speaker 1: to your husband, of course, but you really need a

808
00:45:56,719 --> 00:46:01,959
Speaker 1: place to be heard, to be understood, and to have

809
00:46:01,999 --> 00:46:02,959
Speaker 1: a space that's yours.

810
00:46:03,239 --> 00:46:08,599
Speaker 3: Okay, that's part one. He's part two. So part two

811
00:46:08,639 --> 00:46:12,079
Speaker 3: is to talk to him, as you might imagine, But

812
00:46:12,159 --> 00:46:14,039
Speaker 3: we want you to frame that discussion in a very

813
00:46:14,039 --> 00:46:17,319
Speaker 3: specific way, and the frame of the discussion is specific

814
00:46:17,359 --> 00:46:20,359
Speaker 3: because it's about getting closer. You want to feel like

815
00:46:20,479 --> 00:46:23,639
Speaker 3: you are addressing this as a partnership as a team.

816
00:46:23,799 --> 00:46:26,319
Speaker 3: Even though he's the one that's suffering it, you're both

817
00:46:26,399 --> 00:46:28,479
Speaker 3: dealing with it, and so you want to be able

818
00:46:28,519 --> 00:46:31,879
Speaker 3: to have a series of talks about different things that

819
00:46:31,959 --> 00:46:34,199
Speaker 3: you'll put them on the table, that you can be

820
00:46:34,239 --> 00:46:36,839
Speaker 3: honest and open with one another and deal with it.

821
00:46:37,679 --> 00:46:39,319
Speaker 3: I want to have a series of conversations. And I

822
00:46:39,399 --> 00:46:41,479
Speaker 3: want to start today, you say to him, said by

823
00:46:41,519 --> 00:46:44,399
Speaker 3: talking about just one topic. And so we want you

824
00:46:44,439 --> 00:46:47,439
Speaker 3: to prepare a list of the topics that you would

825
00:46:47,519 --> 00:46:49,639
Speaker 3: like to talk about with him, just so he understands

826
00:46:49,719 --> 00:46:52,039
Speaker 3: roughly what those things are. So they would be things

827
00:46:52,119 --> 00:46:55,399
Speaker 3: like your sex life, whether you should have kids or not,

828
00:46:56,039 --> 00:46:58,919
Speaker 3: how you have fun and whether you have enough of it,

829
00:46:59,079 --> 00:47:01,599
Speaker 3: how you guys socialize and whether there's enough of that,

830
00:47:01,719 --> 00:47:04,559
Speaker 3: what fears you might have of the future, how you're

831
00:47:04,599 --> 00:47:08,639
Speaker 3: dealing with ongoing stress, how you deal with decisions. For example,

832
00:47:08,679 --> 00:47:11,039
Speaker 3: you might need to make the point that, of course

833
00:47:11,039 --> 00:47:14,559
Speaker 3: it's your decision whether you take a supplement. I want

834
00:47:14,559 --> 00:47:17,079
Speaker 3: to feel like, as your wife, I can voice my

835
00:47:17,239 --> 00:47:19,839
Speaker 3: opinion about it and my thought about it, and then

836
00:47:19,879 --> 00:47:20,919
Speaker 3: the decision is yours.

837
00:47:21,839 --> 00:47:25,119
Speaker 1: And I want to hear how you feel about something,

838
00:47:25,199 --> 00:47:27,399
Speaker 1: if you decide to do something, or you don't decide

839
00:47:27,439 --> 00:47:30,359
Speaker 1: to do something, I want to understand. Why tell me

840
00:47:30,479 --> 00:47:33,719
Speaker 1: about your fears, tell me about your choices, and let

841
00:47:33,799 --> 00:47:36,319
Speaker 1: me tell you about how I feel about these things.

842
00:47:38,119 --> 00:47:40,839
Speaker 1: And the same thing with the kids discussion. It's not

843
00:47:40,959 --> 00:47:43,479
Speaker 1: just let's decide whether we're going to have kids or not.

844
00:47:43,559 --> 00:47:46,079
Speaker 1: It's let's talk about how we feel about the idea

845
00:47:46,119 --> 00:47:49,599
Speaker 1: of being parents at this point in our lives. And

846
00:47:49,679 --> 00:47:51,519
Speaker 1: if you do decide to have kids, you're going to

847
00:47:51,559 --> 00:47:53,399
Speaker 1: have lots to talk about, like what do we do

848
00:47:53,439 --> 00:47:56,479
Speaker 1: about genetic testing and how do we both feel about

849
00:47:56,479 --> 00:48:00,639
Speaker 1: that given the genetic nature of this illness. These are

850
00:48:00,639 --> 00:48:04,239
Speaker 1: the kinds of conversations that will make you stronger as

851
00:48:04,239 --> 00:48:06,799
Speaker 1: a couple no matter what you decide.

852
00:48:06,959 --> 00:48:08,879
Speaker 3: And that's what you need to tell that the point

853
00:48:08,919 --> 00:48:11,799
Speaker 3: of these conversations is to feel more connected and more

854
00:48:11,839 --> 00:48:15,439
Speaker 3: partnered as a couple, so we're stronger. And then you

855
00:48:15,519 --> 00:48:17,559
Speaker 3: give them the list and say, so, here's a list

856
00:48:17,559 --> 00:48:20,159
Speaker 3: of topics, and I'd like you to choose one of

857
00:48:20,199 --> 00:48:22,839
Speaker 3: them that we can talk about today. And then the

858
00:48:22,919 --> 00:48:25,479
Speaker 3: next week we'll talk again, and this time you give

859
00:48:25,479 --> 00:48:27,759
Speaker 3: me a list of topics you want to talk about,

860
00:48:27,839 --> 00:48:29,999
Speaker 3: and I'll choose one and we'll talk about that. And

861
00:48:30,039 --> 00:48:32,239
Speaker 3: that's how we'll take turns. But we need to get

862
00:48:32,239 --> 00:48:37,279
Speaker 3: into a regular routine of having these conversations.

863
00:48:37,999 --> 00:48:40,279
Speaker 1: It helps to have that structure, so it's not just

864
00:48:40,439 --> 00:48:43,319
Speaker 1: we need to talk and about what and then you

865
00:48:43,359 --> 00:48:45,239
Speaker 1: sort of kitchen sink at all where all these different

866
00:48:45,239 --> 00:48:48,719
Speaker 1: topics come into one conversation, and the fact that the

867
00:48:48,719 --> 00:48:51,639
Speaker 1: person gets to choose which topic it is. You know,

868
00:48:51,679 --> 00:48:54,959
Speaker 1: you alternate weeks from each other's lists. That means that

869
00:48:55,239 --> 00:48:57,839
Speaker 1: each of your concerns are going to be addressed. So

870
00:48:57,879 --> 00:48:59,759
Speaker 1: he gets to choose from your menu and you get

871
00:48:59,759 --> 00:49:00,919
Speaker 1: to choose from his menu.

872
00:49:02,039 --> 00:49:04,079
Speaker 3: And if he says, but what about this, you say,

873
00:49:04,439 --> 00:49:06,599
Speaker 3: that goes on your list then and if you come

874
00:49:06,679 --> 00:49:08,279
Speaker 3: up with something, then you go, I guess I'll put

875
00:49:08,279 --> 00:49:09,959
Speaker 3: that on my list because we're not talking about it

876
00:49:09,999 --> 00:49:12,439
Speaker 3: now because right now is taken to one talk only.

877
00:49:13,599 --> 00:49:15,319
Speaker 1: So we'd like you to join a support group for

878
00:49:15,399 --> 00:49:20,119
Speaker 1: partners of people with sickle cell disease, and we'd like

879
00:49:20,159 --> 00:49:22,399
Speaker 1: you to really open up in there. There are going

880
00:49:22,439 --> 00:49:24,479
Speaker 1: to be certain things that you feel more comfortable saying

881
00:49:24,519 --> 00:49:27,359
Speaker 1: in there than you might feel sank to SID, and

882
00:49:27,439 --> 00:49:30,039
Speaker 1: that's your space to do that. And then we'd like

883
00:49:30,119 --> 00:49:33,399
Speaker 1: you to open up that conversation with SID with the

884
00:49:33,439 --> 00:49:37,239
Speaker 1: new frame and give him your menu and invite him

885
00:49:37,239 --> 00:49:40,479
Speaker 1: to pick something from the menu for that day, and

886
00:49:40,519 --> 00:49:44,399
Speaker 1: then have him create a menu for you, and then

887
00:49:44,439 --> 00:49:46,999
Speaker 1: you'll get to choose and report back to us.

888
00:49:47,439 --> 00:49:49,279
Speaker 3: How do you feel about doing these things.

889
00:49:49,599 --> 00:49:50,279
Speaker 5: I feel good.

890
00:49:50,399 --> 00:49:54,519
Speaker 4: I've never even thought about a support group before. I'm

891
00:49:54,519 --> 00:49:58,359
Speaker 4: really open to that and seeing what other people's experiences

892
00:49:58,359 --> 00:50:01,519
Speaker 4: are and being able to learn and be able to

893
00:50:01,599 --> 00:50:05,279
Speaker 4: communicate better. I think that the structure and the list

894
00:50:05,359 --> 00:50:09,319
Speaker 4: and having the other person pick is definitely an easy

895
00:50:09,399 --> 00:50:13,239
Speaker 4: your way to bring up really hard conversations. So yeah,

896
00:50:13,319 --> 00:50:16,239
Speaker 4: I'm actually excited to do it that way.

897
00:50:17,799 --> 00:50:18,079
Speaker 3: Great.

898
00:50:18,959 --> 00:50:28,679
Speaker 1: We look forward to hearing how it goes. You know.

899
00:50:28,719 --> 00:50:32,039
Speaker 3: What strikes me here is that she's been dealing with

900
00:50:32,119 --> 00:50:34,119
Speaker 3: this for They've been married for three they've been living

901
00:50:34,119 --> 00:50:36,719
Speaker 3: together two before that, they've been dating for eight years,

902
00:50:36,759 --> 00:50:40,039
Speaker 3: and I somehow think that she's still very much a

903
00:50:40,119 --> 00:50:43,839
Speaker 3: newbie to this in some way because the idea of

904
00:50:43,879 --> 00:50:46,559
Speaker 3: the support group or the idea of having these conversations,

905
00:50:46,599 --> 00:50:50,159
Speaker 3: she was so excited by it. I'm so glad she

906
00:50:50,239 --> 00:50:52,399
Speaker 3: wrote to us, because I think just breaking her out

907
00:50:52,399 --> 00:50:53,799
Speaker 3: of that mold of no, you do not have to

908
00:50:53,799 --> 00:50:54,639
Speaker 3: deal by yourself.

909
00:50:55,079 --> 00:50:57,999
Speaker 1: Yeah, that's something that a lot of caregivers say. It

910
00:50:58,039 --> 00:51:01,799
Speaker 1: never occurred to me to prioritize me, and I think

911
00:51:01,839 --> 00:51:04,479
Speaker 1: that they feel some kind of guilt, like it's one

912
00:51:04,559 --> 00:51:07,599
Speaker 1: or the other. That if I give time to myself,

913
00:51:08,439 --> 00:51:11,999
Speaker 1: then I'm being a caregiver to the other person. You

914
00:51:12,119 --> 00:51:14,919
Speaker 1: will be better not just as a caregiver, but as

915
00:51:14,959 --> 00:51:18,199
Speaker 1: a person if you take care of yourself. It is

916
00:51:18,679 --> 00:51:22,759
Speaker 1: mandatory that you take care of yourself. This image keeps

917
00:51:22,799 --> 00:51:25,479
Speaker 1: going through my mind of she was talking about how

918
00:51:25,599 --> 00:51:27,399
Speaker 1: sometimes sid will wake up in the middle of the

919
00:51:27,519 --> 00:51:32,199
Speaker 1: night because he's experiencing excruciating pain or he's having a

920
00:51:32,239 --> 00:51:36,199
Speaker 1: panic attack because of the enormity of what he's experiencing,

921
00:51:36,719 --> 00:51:39,319
Speaker 1: and he either wants some food from her or he

922
00:51:39,359 --> 00:51:41,839
Speaker 1: wants a hug, he wants some reassurance. And I had

923
00:51:41,879 --> 00:51:46,879
Speaker 1: this image of her comforting him and nobody comforting her.

924
00:51:47,719 --> 00:51:51,519
Speaker 1: How scary to wake up and find your husband is

925
00:51:51,559 --> 00:51:55,439
Speaker 1: having this pain crisis but there is no one attending

926
00:51:55,479 --> 00:51:58,239
Speaker 1: to you in that moment. Did you see the big

927
00:51:58,279 --> 00:52:00,399
Speaker 1: smile on her face when we said the thing about

928
00:52:00,439 --> 00:52:04,079
Speaker 1: the support group. She was so excited about that. And

929
00:52:04,119 --> 00:52:07,759
Speaker 1: I think the part two of it of Wow, we're

930
00:52:07,759 --> 00:52:09,959
Speaker 1: going to have these conversations. But there there's a frame

931
00:52:10,039 --> 00:52:11,039
Speaker 1: and there's a structure.

932
00:52:11,399 --> 00:52:14,119
Speaker 3: The menu does a lot because when couples kitchen sink

933
00:52:14,159 --> 00:52:16,079
Speaker 3: it it means that they don't talk enough, and so

934
00:52:16,119 --> 00:52:19,359
Speaker 3: whenever they do, each of them has the impulster. Let's

935
00:52:19,359 --> 00:52:21,559
Speaker 3: throw in all my complaints, because who knows when we'll

936
00:52:21,599 --> 00:52:24,319
Speaker 3: be able to talk again. And it's exactly because of

937
00:52:24,359 --> 00:52:26,559
Speaker 3: that that the menu is so important and a lot

938
00:52:26,559 --> 00:52:28,799
Speaker 3: of couples can use this menu idea that you create

939
00:52:28,839 --> 00:52:30,439
Speaker 3: a list of the things that you want to talk about.

940
00:52:30,759 --> 00:52:33,079
Speaker 3: Your partner creates a list and each time you set

941
00:52:33,119 --> 00:52:35,479
Speaker 3: aside time to talk about one thing, and each one

942
00:52:35,599 --> 00:52:38,879
Speaker 3: chooses from the other person's list. For couples who don't

943
00:52:38,919 --> 00:52:42,199
Speaker 3: talk well and who need godrails for their discussions, that

944
00:52:42,279 --> 00:52:45,239
Speaker 3: menu idea is a great thing they can implement well.

945
00:52:45,319 --> 00:52:47,479
Speaker 1: I'm really looking forward to hearing how it goes for her.

946
00:52:52,959 --> 00:52:55,919
Speaker 1: You're listening to Dear Therapist for my Heart Radio. We'll

947
00:52:55,919 --> 00:52:57,279
Speaker 1: be back after a quick break.

948
00:53:08,799 --> 00:53:11,359
Speaker 3: We heard back from Savannah, and I'm curious to see

949
00:53:11,359 --> 00:53:11,879
Speaker 3: how that went.

950
00:53:13,319 --> 00:53:16,159
Speaker 4: Hey, Lauri and guy, this is Savannah. I wanted to

951
00:53:16,279 --> 00:53:19,279
Speaker 4: let you know that things have been going really well.

952
00:53:19,919 --> 00:53:24,159
Speaker 4: We both made those lists and we had two conversations

953
00:53:24,239 --> 00:53:28,199
Speaker 4: on different topics. All the items on the list were

954
00:53:28,319 --> 00:53:31,159
Speaker 4: different for each of us, but we sat down and

955
00:53:31,319 --> 00:53:36,759
Speaker 4: just were really open and honest and kept the conversation

956
00:53:37,719 --> 00:53:42,799
Speaker 4: that same way. We decided that we were just going

957
00:53:42,879 --> 00:53:46,599
Speaker 4: to talk and not come to any decisions and just

958
00:53:46,719 --> 00:53:50,679
Speaker 4: start today and keep it going, and that worked out

959
00:53:50,799 --> 00:53:54,319
Speaker 4: really well. We talked about two pretty big things that

960
00:53:54,399 --> 00:53:56,919
Speaker 4: were on both of our minds and it was the

961
00:53:56,919 --> 00:53:59,199
Speaker 4: first time that it had come up for both of us,

962
00:54:00,079 --> 00:54:04,319
Speaker 4: and it felt really good to be able to talk

963
00:54:04,359 --> 00:54:08,239
Speaker 4: about it and open up about it and almost like

964
00:54:08,759 --> 00:54:12,759
Speaker 4: clear the and every time we would veer off topic,

965
00:54:12,999 --> 00:54:15,199
Speaker 4: we would just sort of come back to the one

966
00:54:15,279 --> 00:54:18,319
Speaker 4: thing that we had talked about, you know, exactly the

967
00:54:18,359 --> 00:54:20,159
Speaker 4: way you guys said to do it, and it would

968
00:54:20,159 --> 00:54:20,519
Speaker 4: work out.

969
00:54:20,599 --> 00:54:24,319
Speaker 5: And that's what happened, and it made it a much

970
00:54:24,359 --> 00:54:25,919
Speaker 5: more productive conversation.

971
00:54:26,759 --> 00:54:32,079
Speaker 4: And I think that has allowed us to know what

972
00:54:32,159 --> 00:54:35,039
Speaker 4: the other person is going through and understand it on

973
00:54:35,119 --> 00:54:37,839
Speaker 4: a different level. And I think it's going to help

974
00:54:37,919 --> 00:54:41,599
Speaker 4: us as we continue to have these harder conversations in

975
00:54:41,639 --> 00:54:47,399
Speaker 4: the future. It has definitely opened the door for conversations

976
00:54:47,399 --> 00:54:49,279
Speaker 4: for both of us, and I think it's going to

977
00:54:49,319 --> 00:54:52,559
Speaker 4: help us a lot in the long term. Unfortunately, on

978
00:54:52,639 --> 00:54:56,519
Speaker 4: the support group side, that has been a lot more challenging.

979
00:54:57,239 --> 00:54:59,919
Speaker 4: It's just hard to find one for a spout, so specifically,

980
00:55:00,399 --> 00:55:02,319
Speaker 4: most of the ones that I've been able to find

981
00:55:02,479 --> 00:55:06,959
Speaker 4: are for families of children. But if I'm going to

982
00:55:07,039 --> 00:55:11,119
Speaker 4: keep searching and keep trying to find options, and I'm

983
00:55:11,199 --> 00:55:15,239
Speaker 4: gonna ask around, ask the doctors, ask people in the community,

984
00:55:15,719 --> 00:55:19,839
Speaker 4: and take it from there, maybe there are other infectious

985
00:55:19,879 --> 00:55:23,119
Speaker 4: diseases or something that are similar where there is one

986
00:55:23,159 --> 00:55:26,439
Speaker 4: specifically for spouse's I'm committed to doing it and to

987
00:55:26,559 --> 00:55:29,959
Speaker 4: finding it and certainly not going to give up, especially

988
00:55:29,999 --> 00:55:35,999
Speaker 4: given that the other half of the advice was super

989
00:55:35,999 --> 00:55:39,319
Speaker 4: helpful and came in handy and I feel so much better.

990
00:55:39,479 --> 00:55:44,919
Speaker 4: So thank you again. Definitely moving forward in a much

991
00:55:44,959 --> 00:55:48,879
Speaker 4: more open way, and I really really appreciate it.

992
00:55:49,319 --> 00:55:50,439
Speaker 5: Thank you. Bye.

993
00:55:51,239 --> 00:55:54,839
Speaker 1: I'm really glad that Savannah started having these conversations that

994
00:55:54,919 --> 00:55:58,799
Speaker 1: are long overdue. It's really common when you're the caregiver

995
00:55:59,079 --> 00:56:02,559
Speaker 1: that you're afraid to talk about anything that's bothering you

996
00:56:02,639 --> 00:56:05,719
Speaker 1: because you feel like your concerns don't rank as high

997
00:56:05,719 --> 00:56:08,759
Speaker 1: on some kind of hierarchy of needs as your partners

998
00:56:08,759 --> 00:56:12,119
Speaker 1: who struggle with the illness. What she saw is that

999
00:56:12,159 --> 00:56:14,999
Speaker 1: it helped both of them to be able to use

1000
00:56:15,039 --> 00:56:18,239
Speaker 1: the menu and now I think there's hope of being

1001
00:56:18,279 --> 00:56:21,039
Speaker 1: able to be heard, being able to have their needs met,

1002
00:56:21,039 --> 00:56:23,519
Speaker 1: and also being able to come closer to one another.

1003
00:56:23,999 --> 00:56:26,919
Speaker 3: I've worked with many people who've had chronic illnesses, and

1004
00:56:26,959 --> 00:56:30,639
Speaker 3: it often comes back that when one person opens the door,

1005
00:56:30,639 --> 00:56:32,959
Speaker 3: the other person goes, oh great, I'm dying to open the.

1006
00:56:32,919 --> 00:56:36,319
Speaker 1: Door right and doing it with the menu gives them

1007
00:56:36,359 --> 00:56:39,399
Speaker 1: a structure for this, and even though the topics are

1008
00:56:39,479 --> 00:56:41,519
Speaker 1: very serious, it also makes it a little bit fun,

1009
00:56:41,559 --> 00:56:43,399
Speaker 1: like what am I going to choose from your menu today?

1010
00:56:43,999 --> 00:56:46,839
Speaker 3: I think that this is something all couples can use

1011
00:56:46,919 --> 00:56:48,799
Speaker 3: because it's always a little bit of a tense point

1012
00:56:49,079 --> 00:56:50,759
Speaker 3: when you want to have a discussion. So to come

1013
00:56:50,799 --> 00:56:52,919
Speaker 3: and say, here's my menu, come up with one. We'll

1014
00:56:52,919 --> 00:56:54,959
Speaker 3: do one of mine one time, one of yours another

1015
00:56:54,999 --> 00:56:58,399
Speaker 3: time is a great way for couples to tackle hot

1016
00:56:58,479 --> 00:56:59,919
Speaker 3: button or sensitive.

1017
00:56:59,519 --> 00:57:02,599
Speaker 1: Topics in the meantime. I think the support group would

1018
00:57:02,639 --> 00:57:04,199
Speaker 1: be very helpful for her, and I just want to

1019
00:57:04,239 --> 00:57:06,439
Speaker 1: say that even though she wasn't able to find a

1020
00:57:06,479 --> 00:57:11,319
Speaker 1: support group for caregivers specifically related to sickle cell, I

1021
00:57:11,359 --> 00:57:14,519
Speaker 1: would urge her to just go to a support group

1022
00:57:14,559 --> 00:57:17,639
Speaker 1: for caregivers in general, there are many support groups out

1023
00:57:17,639 --> 00:57:20,239
Speaker 1: there for people who have a partner who is ill.

1024
00:57:20,519 --> 00:57:22,959
Speaker 1: I think that caregivers have a lot of overlaps in

1025
00:57:23,039 --> 00:57:24,279
Speaker 1: terms of what they're going through.

1026
00:57:24,479 --> 00:57:27,879
Speaker 3: I agree, but my recommendation always is if you're looking

1027
00:57:27,879 --> 00:57:30,639
Speaker 3: for support group for a specific thing and you can

1028
00:57:30,759 --> 00:57:39,559
Speaker 3: find it, start one. Hey, fellow travelers, if you've used

1029
00:57:39,639 --> 00:57:42,319
Speaker 3: any of our advice from the podcast in your own life,

1030
00:57:42,559 --> 00:57:45,639
Speaker 3: send us a quick voice memo to Lori Anddguy at

1031
00:57:45,679 --> 00:57:48,439
Speaker 3: iHeartMedia dot com and tell us about it. We may

1032
00:57:48,479 --> 00:57:49,759
Speaker 3: include it in a future show.

1033
00:57:50,079 --> 00:57:52,919
Speaker 1: And if you're enjoying our podcast each week, please help

1034
00:57:52,959 --> 00:57:56,039
Speaker 1: support Dear Therapists. You can tell your friends about it,

1035
00:57:56,159 --> 00:57:58,119
Speaker 1: and we'd be so grateful if you'd leave us a

1036
00:57:58,159 --> 00:58:01,759
Speaker 1: five star review on Apple Podcasts. Your reviews help people

1037
00:58:01,759 --> 00:58:05,199
Speaker 1: find the show. You can follow us both online. I'm

1038
00:58:05,239 --> 00:58:07,879
Speaker 1: at Lorigottlieb dot com and you can follow me on

1039
00:58:07,919 --> 00:58:13,759
Speaker 1: Twitter at Lorigottlieb one or on Instagram at Lorigottlieb Underscore Author.

1040
00:58:13,679 --> 00:58:16,879
Speaker 3: And I'm at Guywinch dot com. I'm on Twitter and

1041
00:58:16,959 --> 00:58:20,759
Speaker 3: on Instagram at Guywinch. If you have a dilemma you'd

1042
00:58:20,759 --> 00:58:23,599
Speaker 3: like to discuss with us, Big or small email us

1043
00:58:23,639 --> 00:58:26,799
Speaker 3: at Lorianguy at iHeartMedia dot com.

1044
00:58:26,839 --> 00:58:31,119
Speaker 1: Our executive producers Christopher Hasiotis, were produced and edited by

1045
00:58:31,159 --> 00:58:35,159
Speaker 1: Mike Johns. Special thanks to Samuel Benefield and to our

1046
00:58:35,199 --> 00:58:40,399
Speaker 1: podcast Fairygodmother Katie Couric. Dear Therapist is a production of

1047
00:58:40,559 --> 00:58:41,479
Speaker 1: iHeartRadio