1 00:00:09,760 --> 00:00:13,040 Speaker 1: Today, we are joined by someone who has spent decades 2 00:00:13,080 --> 00:00:16,040 Speaker 1: turning some of the most challenging things that she's been 3 00:00:16,079 --> 00:00:20,880 Speaker 1: through into a platform for building community. She is an advocate. 4 00:00:21,000 --> 00:00:23,479 Speaker 1: She has met with Congress members to stand up for 5 00:00:23,520 --> 00:00:26,920 Speaker 1: that community. She is also a writer. She is also 6 00:00:27,000 --> 00:00:29,520 Speaker 1: a plant mom. Near and dear to my heart. She 7 00:00:29,680 --> 00:00:34,520 Speaker 1: is the one and only Alicia Bridges. And Alicia's journey 8 00:00:34,520 --> 00:00:38,239 Speaker 1: with siriasis has been lifelong. She was diagnosed as just 9 00:00:38,280 --> 00:00:42,960 Speaker 1: a young child after chicken pox triggered siasis across ninety 10 00:00:43,000 --> 00:00:47,519 Speaker 1: percent of her body. She spent years hiding that soriasis 11 00:00:47,600 --> 00:00:51,920 Speaker 1: until she didn't. She went on to win the National 12 00:00:51,960 --> 00:00:57,000 Speaker 1: Pariasis Foundation's highest Volunteer honor and to write pieces about 13 00:00:57,000 --> 00:01:00,440 Speaker 1: this condition and about her journey with it that often 14 00:01:00,520 --> 00:01:04,560 Speaker 1: go viral. And Alisha knows that chronic illness comes with 15 00:01:04,640 --> 00:01:07,600 Speaker 1: other stuff. Mental health can of course take a dive 16 00:01:07,640 --> 00:01:10,600 Speaker 1: as well, and she lets people know it's totally okay 17 00:01:10,640 --> 00:01:13,240 Speaker 1: to talk about that. So today we're going to get 18 00:01:13,240 --> 00:01:16,920 Speaker 1: into Alicia's whole story and talk about the history of 19 00:01:17,040 --> 00:01:21,199 Speaker 1: patient advocacy up until today. Alicia. Welcome to our skin. 20 00:01:21,319 --> 00:01:22,680 Speaker 1: We are so glad you're here. 21 00:01:23,160 --> 00:01:25,840 Speaker 2: Hi, Holly I'm really happy to be here. Thank you 22 00:01:25,880 --> 00:01:26,800 Speaker 2: so much for having me. 23 00:01:27,240 --> 00:01:30,160 Speaker 1: I already talked a lot about your impressive resume, but 24 00:01:30,240 --> 00:01:32,640 Speaker 1: is there anything that you would like to add to that. Well, 25 00:01:32,680 --> 00:01:35,759 Speaker 1: thank you so much, Holly. Actually, I released a book 26 00:01:35,840 --> 00:01:39,399 Speaker 1: last year's called Dig Deeper, a twenty one week Guide 27 00:01:39,400 --> 00:01:44,000 Speaker 1: to Self Discovery through Plants, and it's a very unique challenge. 28 00:01:44,040 --> 00:01:47,000 Speaker 2: It's a twenty one week challenge where basically, every week 29 00:01:47,040 --> 00:01:50,360 Speaker 2: you read a devotional about growth, and during this time 30 00:01:50,400 --> 00:01:52,840 Speaker 2: you're taking care of a plant. And at the end 31 00:01:53,080 --> 00:01:56,320 Speaker 2: of each chapter you have tasks that you do for 32 00:01:56,400 --> 00:01:59,760 Speaker 2: your plant, and then you have questions around trauma that 33 00:01:59,800 --> 00:02:02,640 Speaker 2: you answer for yourself. And the hope is that as 34 00:02:02,680 --> 00:02:06,400 Speaker 2: you care for this plant, it is a tangible example 35 00:02:06,760 --> 00:02:12,880 Speaker 2: of the process of growth, good, bad, failures, accomplishments. It 36 00:02:12,960 --> 00:02:16,560 Speaker 2: really has helped me to navigate the ups and downs 37 00:02:16,639 --> 00:02:18,919 Speaker 2: of my life, and I hope that it will help 38 00:02:19,000 --> 00:02:21,280 Speaker 2: others who pick it up as well, who love plants. 39 00:02:21,560 --> 00:02:25,280 Speaker 1: That's such a genius idea. It's on my list, so 40 00:02:25,400 --> 00:02:28,280 Speaker 1: I'm not even joking. I'm all over that book. 41 00:02:29,120 --> 00:02:30,800 Speaker 2: Thank you. Let me know what you think. 42 00:02:31,400 --> 00:02:34,200 Speaker 1: Okay, We're one hundred percent going to talk about psoriasis. 43 00:02:34,240 --> 00:02:36,640 Speaker 1: But listen, I have to ask you, how did you 44 00:02:36,680 --> 00:02:39,440 Speaker 1: become a plant mom? But to you just that entail 45 00:02:39,600 --> 00:02:40,160 Speaker 1: that title. 46 00:02:41,080 --> 00:02:45,960 Speaker 2: Yes, So I became a plant mom. Randomly. I had 47 00:02:45,960 --> 00:02:48,400 Speaker 2: this plant. I can't remember where I got it from, 48 00:02:48,760 --> 00:02:53,280 Speaker 2: but it was a lily plant. And they can be 49 00:02:53,680 --> 00:02:59,079 Speaker 2: very finicky and need lots of love, but also want 50 00:02:59,080 --> 00:03:02,120 Speaker 2: to be left alone and very dramatic. They'll let you 51 00:03:02,120 --> 00:03:05,160 Speaker 2: know exactly when they need something or something is wrong. 52 00:03:05,760 --> 00:03:08,600 Speaker 2: And so I was caring for this plant, really my 53 00:03:08,680 --> 00:03:10,800 Speaker 2: first plant, and I was going out of town for 54 00:03:10,840 --> 00:03:14,160 Speaker 2: a week, and I was like, oh my goodness, this 55 00:03:14,400 --> 00:03:16,800 Speaker 2: plant is going to have to be watered while I'm 56 00:03:16,840 --> 00:03:19,000 Speaker 2: out of town. What am I going to do? So 57 00:03:19,240 --> 00:03:22,080 Speaker 2: I did some research and found water bulbs. So I 58 00:03:22,080 --> 00:03:24,720 Speaker 2: thought I had the perfect thing for my plant. I 59 00:03:24,800 --> 00:03:27,400 Speaker 2: was going for a week come back and the plant 60 00:03:27,400 --> 00:03:32,359 Speaker 2: looked pitiful. The leaves were hanging low, some had kind 61 00:03:32,400 --> 00:03:35,480 Speaker 2: of turned brown. It was just really sad. And in 62 00:03:35,520 --> 00:03:37,880 Speaker 2: that moment, I'm like, oh my goodness, I thought I 63 00:03:37,920 --> 00:03:40,880 Speaker 2: had done everything that I could for this plant. And 64 00:03:40,960 --> 00:03:45,920 Speaker 2: so that moment, oddly enough, as I reflected on it, 65 00:03:46,360 --> 00:03:50,880 Speaker 2: started teaching me about issues that I had with my 66 00:03:51,120 --> 00:03:56,360 Speaker 2: parents who had substance abuse issues, so they were not 67 00:03:56,840 --> 00:03:59,440 Speaker 2: able to be there for me as I would hope. 68 00:04:00,040 --> 00:04:02,680 Speaker 2: But that plan in that moment really taught me grace 69 00:04:02,760 --> 00:04:06,000 Speaker 2: and forgiveness and how sometimes even though you think you're 70 00:04:06,040 --> 00:04:08,200 Speaker 2: doing the best that you can, or you think you're 71 00:04:08,200 --> 00:04:13,000 Speaker 2: doing the best, that sometimes it can call issues or 72 00:04:13,080 --> 00:04:16,320 Speaker 2: damage because you just don't have the expertise. So that 73 00:04:16,360 --> 00:04:18,680 Speaker 2: really helped me give grace to my parents, and so 74 00:04:19,279 --> 00:04:22,359 Speaker 2: as I evaluated that, it just made me think to myself, 75 00:04:22,400 --> 00:04:25,520 Speaker 2: what else can I learn from plants? And so that's 76 00:04:25,640 --> 00:04:28,360 Speaker 2: kind of how it developed. Yeah, I saw. 77 00:04:28,160 --> 00:04:30,360 Speaker 1: One of your Instagram posts recently where I'm going to 78 00:04:30,400 --> 00:04:33,080 Speaker 1: misquote it, but it was basically like, plants are not 79 00:04:33,160 --> 00:04:36,760 Speaker 1: worried about who's watching them progress. They're just doing their 80 00:04:36,760 --> 00:04:40,280 Speaker 1: thing and that should be our inspiration. And I was like, damn, 81 00:04:40,360 --> 00:04:44,919 Speaker 1: I really needed to hear that. Oh, Yes, that was 82 00:04:45,040 --> 00:04:46,840 Speaker 1: really really good. Yes, as much as I want to 83 00:04:46,839 --> 00:04:48,960 Speaker 1: talk about plants all day long, we really have to 84 00:04:49,000 --> 00:04:51,080 Speaker 1: get into your work because it is also important and 85 00:04:51,120 --> 00:04:53,240 Speaker 1: I also want to talk about it. One of the 86 00:04:53,279 --> 00:04:56,680 Speaker 1: reasons that I think that your voice and your writing 87 00:04:56,760 --> 00:04:59,640 Speaker 1: resonates with so many people, is that you do really 88 00:04:59,720 --> 00:05:03,640 Speaker 1: take this holistic approach to your work. You know, mental 89 00:05:03,640 --> 00:05:07,159 Speaker 1: health and chronic illness often go hand in hand, right, 90 00:05:07,480 --> 00:05:10,800 Speaker 1: tell me about what made that particular connection so abundantly 91 00:05:10,839 --> 00:05:11,400 Speaker 1: clear for you. 92 00:05:12,040 --> 00:05:15,520 Speaker 2: I've always been a person that has been centered, that 93 00:05:15,760 --> 00:05:23,760 Speaker 2: appreciates awareness, meditation. So having a visible condition like sariasis, 94 00:05:23,839 --> 00:05:28,360 Speaker 2: it really impacts your mental health. So even being a 95 00:05:28,480 --> 00:05:34,040 Speaker 2: child and being younger, understanding what your emotions and your 96 00:05:34,120 --> 00:05:37,320 Speaker 2: mental health was important to me, even though I didn't 97 00:05:37,360 --> 00:05:40,920 Speaker 2: necessarily understand it, nor could I really articulate it because 98 00:05:40,960 --> 00:05:46,599 Speaker 2: I was so young, But it really goes hand in hand. 99 00:05:46,839 --> 00:05:50,480 Speaker 2: And I think my voice resonates with so many people 100 00:05:51,000 --> 00:05:56,720 Speaker 2: because I'm vulnerable and I share parts of my story 101 00:05:57,040 --> 00:06:01,159 Speaker 2: that some people feel a lot of shame about. But 102 00:06:01,920 --> 00:06:05,400 Speaker 2: I've learned to overcome that shame and to push through 103 00:06:05,440 --> 00:06:08,360 Speaker 2: that because so many times the things that you think 104 00:06:08,400 --> 00:06:13,040 Speaker 2: are really embarrassing or no one will understand, they do understand, 105 00:06:13,120 --> 00:06:14,760 Speaker 2: they're just not talking about it. 106 00:06:15,560 --> 00:06:17,599 Speaker 1: Yeah. I also just love that you get to be 107 00:06:17,680 --> 00:06:20,960 Speaker 1: more authentic that way. Yeah, I want you to also 108 00:06:21,000 --> 00:06:24,040 Speaker 1: take me back to where all of this advocacy and 109 00:06:24,320 --> 00:06:27,760 Speaker 1: wisdom began. We've talked about you being very young and 110 00:06:27,800 --> 00:06:31,360 Speaker 1: not necessarily knowing the vocabulary of this concept of mental 111 00:06:31,360 --> 00:06:34,040 Speaker 1: health going alongside it, but that kind of intuiting it. 112 00:06:34,400 --> 00:06:37,719 Speaker 1: So you were seven years old when sarriasis first appeared 113 00:06:38,080 --> 00:06:42,039 Speaker 1: through a chicken pox infection. That is a lot for 114 00:06:42,080 --> 00:06:45,599 Speaker 1: a seven year old to absorb. What was that early 115 00:06:45,680 --> 00:06:48,839 Speaker 1: experience like for you and for your family as you 116 00:06:48,920 --> 00:06:51,960 Speaker 1: figured this out right? Your grandmother was highly involved. 117 00:06:51,600 --> 00:06:56,920 Speaker 2: Correct, Yeah, My family, especially my grandma, were very involved 118 00:06:56,960 --> 00:07:00,800 Speaker 2: in finding things that worked, make sure that I was 119 00:07:00,839 --> 00:07:04,400 Speaker 2: still involved in spite of this. Was also the first 120 00:07:04,400 --> 00:07:07,400 Speaker 2: time dealing with something so severe in to this degree, 121 00:07:07,480 --> 00:07:10,680 Speaker 2: so it was kind of a learning experience for all 122 00:07:10,720 --> 00:07:13,600 Speaker 2: of us. But to be honest, I would say the 123 00:07:13,640 --> 00:07:16,920 Speaker 2: first three years of having some risis between that seven 124 00:07:17,040 --> 00:07:21,600 Speaker 2: to ten year old face, I didn't realize the implications 125 00:07:21,640 --> 00:07:25,960 Speaker 2: that a visible condition would cause over my life. You know, 126 00:07:26,000 --> 00:07:32,320 Speaker 2: you really don't understand beauty standards or what it means 127 00:07:32,360 --> 00:07:35,440 Speaker 2: to be different because you're new to the world. I 128 00:07:35,520 --> 00:07:38,800 Speaker 2: particularly remember being in the fifth grade and then that's 129 00:07:38,840 --> 00:07:42,200 Speaker 2: when I started to hide. That's when I started to 130 00:07:42,280 --> 00:07:46,240 Speaker 2: really absorb the shame that I was feeling. That's when 131 00:07:46,240 --> 00:07:50,600 Speaker 2: I started lying to classmates, and honestly, that is something 132 00:07:50,680 --> 00:07:56,000 Speaker 2: that stuck with me for years through college and out 133 00:07:56,080 --> 00:07:59,840 Speaker 2: of college, up until I decided to take a stand 134 00:08:00,120 --> 00:08:02,480 Speaker 2: to speak out about what I was experienced in. But 135 00:08:03,000 --> 00:08:05,800 Speaker 2: I felt a lot of shame, a lot of hopelessness. 136 00:08:05,840 --> 00:08:08,120 Speaker 2: Every time you think you have something that's going to 137 00:08:08,200 --> 00:08:11,000 Speaker 2: make a difference in your skin, it doesn't work or 138 00:08:11,040 --> 00:08:13,960 Speaker 2: you can't have access to it. So it was very 139 00:08:14,360 --> 00:08:17,600 Speaker 2: difficult for my family and I to navigate. 140 00:08:17,440 --> 00:08:19,840 Speaker 1: What our rough journey to put a kin on so early. 141 00:08:19,960 --> 00:08:24,040 Speaker 1: Thanks Universe, even though you are not that old, you 142 00:08:24,120 --> 00:08:26,040 Speaker 1: still grew up in a time when there wasn't a 143 00:08:26,080 --> 00:08:29,840 Speaker 1: lot of public awareness about psoriasis. It's kind of almost 144 00:08:29,920 --> 00:08:33,240 Speaker 1: non existent, and there really was no vocabulary for it 145 00:08:33,280 --> 00:08:36,560 Speaker 1: in the public consciousness. People didn't understand what you were 146 00:08:36,559 --> 00:08:39,319 Speaker 1: seeing when you mentioned having to lie to your classmates, 147 00:08:40,000 --> 00:08:42,440 Speaker 1: like because they don't understand it even if you used 148 00:08:42,440 --> 00:08:44,640 Speaker 1: any of the science terms, I'm sure they didn't know 149 00:08:44,679 --> 00:08:48,080 Speaker 1: what that meant, right, What was that like? And what 150 00:08:48,240 --> 00:08:50,840 Speaker 1: is your perception of how things have and have not 151 00:08:50,960 --> 00:08:51,800 Speaker 1: changed since then? 152 00:08:52,360 --> 00:08:55,480 Speaker 2: It was really difficult, especially being a seven year old 153 00:08:56,000 --> 00:08:58,720 Speaker 2: not really even understanding what was going on in my 154 00:08:58,840 --> 00:09:02,120 Speaker 2: own body, and then having to explain that to not 155 00:09:02,160 --> 00:09:05,520 Speaker 2: only my classmates but the adults around me, and then 156 00:09:05,640 --> 00:09:09,200 Speaker 2: not having a lot of resources and the resources that 157 00:09:09,240 --> 00:09:13,640 Speaker 2: you do have, you know, they're not featuring black women 158 00:09:13,880 --> 00:09:20,480 Speaker 2: or black skin or black kids, So it definitely was difficult. 159 00:09:20,640 --> 00:09:25,880 Speaker 2: It was really challenging, you know. So rises wasn't well 160 00:09:25,920 --> 00:09:29,120 Speaker 2: known when I was growing up, So now you're able 161 00:09:29,320 --> 00:09:34,559 Speaker 2: to enter into the conversation with some familiar arity there. 162 00:09:34,880 --> 00:09:37,000 Speaker 2: There's a lot of commercials on TV, there are a 163 00:09:37,040 --> 00:09:40,800 Speaker 2: lot of more people speaking out about it, especially celebrities. 164 00:09:41,120 --> 00:09:43,760 Speaker 2: So I would definitely say that, sure, we have some 165 00:09:43,880 --> 00:09:46,080 Speaker 2: more work that we have to continue to do, but 166 00:09:46,120 --> 00:09:48,000 Speaker 2: it's a lot better than when I was growing up. 167 00:09:48,360 --> 00:09:52,320 Speaker 1: Yeah. Yeah, you did something that is hard for me 168 00:09:52,440 --> 00:09:56,680 Speaker 1: and probably many listeners to imagine in terms of bravery, 169 00:09:56,760 --> 00:10:00,600 Speaker 1: because you competed in a beauty pageant when you were sixteen, 170 00:10:00,800 --> 00:10:04,319 Speaker 1: when according to your own account, you were ninety percent 171 00:10:04,920 --> 00:10:09,040 Speaker 1: covered with plaques and you nearly walked out of a 172 00:10:09,120 --> 00:10:12,120 Speaker 1: dress shop doing a fitting before you even got started 173 00:10:12,200 --> 00:10:15,040 Speaker 1: with all of this. But your grandmother, once again was 174 00:10:15,080 --> 00:10:17,920 Speaker 1: part of this process and kind of helped you through it. 175 00:10:18,480 --> 00:10:21,320 Speaker 1: Talk about that and what changed for you as a 176 00:10:21,360 --> 00:10:24,839 Speaker 1: result of actually pushing through that what seems to be 177 00:10:25,040 --> 00:10:26,360 Speaker 1: very daunting experience. 178 00:10:27,280 --> 00:10:31,960 Speaker 2: Yeah, I remember going to the pageants and seeing the 179 00:10:32,000 --> 00:10:35,560 Speaker 2: other girls and I'm like, I want to do that, 180 00:10:35,920 --> 00:10:39,160 Speaker 2: you know, I want to be on that stage. And 181 00:10:39,320 --> 00:10:42,800 Speaker 2: it's almost like I put pariasis in the back burner 182 00:10:42,880 --> 00:10:44,840 Speaker 2: and I was like, you know what, I'm gonna worry 183 00:10:44,840 --> 00:10:47,360 Speaker 2: about that later, which is kind of the attitude I 184 00:10:47,400 --> 00:10:51,160 Speaker 2: have now in adulthood. Sometimes I'm just like, we'll get 185 00:10:51,160 --> 00:10:53,240 Speaker 2: to that. When we get to that. Right now, we're 186 00:10:53,240 --> 00:10:57,480 Speaker 2: gonna be present, which, as I'm talking, this is like 187 00:10:57,559 --> 00:10:59,959 Speaker 2: therapy because I'm like, wow, I've always been like that, 188 00:11:00,200 --> 00:11:04,640 Speaker 2: So went through that whole process of like practices. I 189 00:11:04,760 --> 00:11:08,360 Speaker 2: just remember really having a breakdown when it was time 190 00:11:08,400 --> 00:11:11,600 Speaker 2: to try on dresses and to do the dress for her. 191 00:11:11,679 --> 00:11:14,200 Speaker 2: So I remember going this was before the makeup, and 192 00:11:14,240 --> 00:11:18,079 Speaker 2: I was just nervous the whole time. I had anxiety. 193 00:11:18,440 --> 00:11:23,920 Speaker 2: I was just very fearful. And it's crazy because twenty 194 00:11:24,000 --> 00:11:27,040 Speaker 2: years later, I still get emotional from that moment. 195 00:11:27,200 --> 00:11:30,000 Speaker 1: Of course, that's a scary thing and it's a very 196 00:11:30,040 --> 00:11:33,200 Speaker 1: vulnerable time. I appreciate you talking about it. 197 00:11:33,480 --> 00:11:39,120 Speaker 2: You know, I just remember wanting to quit, and my 198 00:11:39,200 --> 00:11:42,480 Speaker 2: grandma is like, no, you're not going to quit. We're 199 00:11:42,520 --> 00:11:45,160 Speaker 2: just gonna figure out a way for you to be 200 00:11:45,240 --> 00:11:49,840 Speaker 2: in it comfortably. So that's when she took me to 201 00:11:50,520 --> 00:11:53,520 Speaker 2: some department store when malls were a thing. It's so 202 00:11:53,600 --> 00:11:58,480 Speaker 2: crazy that malls are not a thing anymore. And we 203 00:11:58,559 --> 00:12:00,800 Speaker 2: went to a counter and the lady was really nice 204 00:12:00,840 --> 00:12:04,560 Speaker 2: and they got me the right match for this body makeup. 205 00:12:05,160 --> 00:12:10,240 Speaker 2: And that was how I was able to move forward 206 00:12:10,320 --> 00:12:19,600 Speaker 2: in the pageant, and then I ended up winning, which 207 00:12:19,679 --> 00:12:23,800 Speaker 2: that I think you know, that was planning the seed, like, 208 00:12:24,360 --> 00:12:28,800 Speaker 2: just figure it out. Even if you can't necessarily do 209 00:12:29,000 --> 00:12:33,760 Speaker 2: it to the capacity of everybody else or in the 210 00:12:33,800 --> 00:12:38,160 Speaker 2: sphere of normalcy, it doesn't matter. Just do it. So 211 00:12:39,120 --> 00:12:43,360 Speaker 2: that moment really taught me, even if I'm feeling afraid, 212 00:12:43,920 --> 00:12:47,920 Speaker 2: if I'm feeling shame, that it's okay to still do it, 213 00:12:48,000 --> 00:12:51,240 Speaker 2: but to find an alternative way to do it where 214 00:12:51,280 --> 00:12:54,880 Speaker 2: you push yourself a little bit but you still remain 215 00:12:55,160 --> 00:12:58,840 Speaker 2: somewhat comfortable, because it's a dance. It's a dance with 216 00:13:00,280 --> 00:13:05,880 Speaker 2: uncomfortable and then being so uncomfortable that you're not valuing 217 00:13:06,600 --> 00:13:09,880 Speaker 2: your fears and your experience. It's a very thin line. 218 00:13:10,200 --> 00:13:14,280 Speaker 1: Yeah, that's incredible. Also, I just love that you knocked 219 00:13:14,280 --> 00:13:15,840 Speaker 1: it out of the park. And one that's like a 220 00:13:15,880 --> 00:13:18,800 Speaker 1: great yeah, you gave yourself a great little example you 221 00:13:18,800 --> 00:13:19,840 Speaker 1: could always return to. 222 00:13:20,360 --> 00:13:20,760 Speaker 2: Man. 223 00:13:20,960 --> 00:13:24,560 Speaker 1: Yes, And then you, of course have become an example 224 00:13:24,600 --> 00:13:28,480 Speaker 1: for other people through this. And I want to ask 225 00:13:28,520 --> 00:13:32,240 Speaker 1: you about how you went from someone who was learning 226 00:13:32,280 --> 00:13:35,280 Speaker 1: the value of feeling the fear and doing it anyway 227 00:13:35,360 --> 00:13:38,760 Speaker 1: and pushing through while also honoring your own feelings to 228 00:13:38,840 --> 00:13:42,640 Speaker 1: someone that now advocates for others and teaches them to 229 00:13:42,720 --> 00:13:45,960 Speaker 1: find their ways of handling this. How did all of 230 00:13:45,960 --> 00:13:48,840 Speaker 1: this become such an important part of your life? 231 00:13:49,240 --> 00:13:51,400 Speaker 2: You know, never in a million years if I could 232 00:13:51,440 --> 00:13:54,240 Speaker 2: go back to that sixteen year old self and say hey, 233 00:13:54,240 --> 00:13:57,120 Speaker 2: you're going to be speaking out about Parisis, she would 234 00:13:57,120 --> 00:13:59,760 Speaker 2: be like, what, You're crazy? But I think what really 235 00:13:59,800 --> 00:14:03,319 Speaker 2: am powered me was being in the online support groups 236 00:14:03,640 --> 00:14:07,960 Speaker 2: and seeing that other people were like me, and that 237 00:14:08,000 --> 00:14:11,319 Speaker 2: there were other people who were also suffering in silence 238 00:14:11,520 --> 00:14:14,120 Speaker 2: and too a shame to speak out. And I just 239 00:14:14,200 --> 00:14:19,000 Speaker 2: remember my first post and one of the support groups 240 00:14:19,000 --> 00:14:21,960 Speaker 2: and how everybody could relate to it. And somebody sent 241 00:14:22,040 --> 00:14:25,440 Speaker 2: it to the National Priasis Foundation and they were really touched, 242 00:14:25,960 --> 00:14:27,800 Speaker 2: and then they invited me to come out to a 243 00:14:27,880 --> 00:14:30,880 Speaker 2: volunteer conference and they had a workshop about telling your 244 00:14:30,920 --> 00:14:36,840 Speaker 2: story online. And that's kind of when things just started happening, 245 00:14:37,080 --> 00:14:40,680 Speaker 2: going to that conference, meeting other people like me, and 246 00:14:40,720 --> 00:14:44,000 Speaker 2: then it being put in my face that there was 247 00:14:44,040 --> 00:14:49,320 Speaker 2: an opportunity to tell my story through being online, through blogging, 248 00:14:49,640 --> 00:14:53,160 Speaker 2: and that is really what got all of this started. 249 00:14:53,280 --> 00:14:57,720 Speaker 2: And honestly, I remember the first picture I posted on 250 00:14:57,760 --> 00:15:00,960 Speaker 2: my Facebook and I deleted it, felt shame and put 251 00:15:00,960 --> 00:15:03,080 Speaker 2: it back up and deleted it, and then I finally 252 00:15:03,560 --> 00:15:06,080 Speaker 2: put it up, kept it up, closed my laptop, and 253 00:15:06,120 --> 00:15:09,600 Speaker 2: walked away from it. When I came back the next day, 254 00:15:10,120 --> 00:15:14,160 Speaker 2: I was just so shocked by all the positive comments 255 00:15:14,520 --> 00:15:18,960 Speaker 2: and support and openness that I received from people on 256 00:15:19,040 --> 00:15:22,040 Speaker 2: my page. Folks that I went to college with, that 257 00:15:22,120 --> 00:15:24,960 Speaker 2: I would cross paths with every day, had classes with, 258 00:15:25,320 --> 00:15:27,320 Speaker 2: and they're like, Oh, I have some risis and I've 259 00:15:27,360 --> 00:15:31,920 Speaker 2: just never told anybody so experience thing that just really 260 00:15:32,080 --> 00:15:35,440 Speaker 2: empowered me to do more. I said, there's more work 261 00:15:35,760 --> 00:15:39,120 Speaker 2: that needs to be done. If something like this could 262 00:15:39,200 --> 00:15:40,440 Speaker 2: get this kind of response. 263 00:15:41,320 --> 00:15:43,920 Speaker 1: Well, And speaking of more work being done. You have 264 00:15:44,040 --> 00:15:47,360 Speaker 1: taken this discussion to Capitol Hill, you have gone and 265 00:15:47,360 --> 00:15:51,080 Speaker 1: spoken to members of Congress. What did you talk about, Like, 266 00:15:51,120 --> 00:15:53,720 Speaker 1: what are those conversations like, how do they play out? 267 00:15:54,000 --> 00:15:56,520 Speaker 2: A lot of times when I have gone, it is 268 00:15:56,880 --> 00:16:02,000 Speaker 2: for legislation around step therapy. There's a lot of stipulations 269 00:16:02,080 --> 00:16:05,760 Speaker 2: on when you can get treatments and the decisions that 270 00:16:05,800 --> 00:16:09,560 Speaker 2: you make for your care, and so we didn't want 271 00:16:09,560 --> 00:16:12,880 Speaker 2: to leave that to the insurance companies, which often happens, 272 00:16:13,320 --> 00:16:17,120 Speaker 2: and so our job was to go and tell Congress 273 00:16:17,560 --> 00:16:21,200 Speaker 2: what it is like to live with a visible chronic 274 00:16:21,280 --> 00:16:25,680 Speaker 2: disease like siasis, the implications that it has on our life, 275 00:16:25,960 --> 00:16:29,680 Speaker 2: and the importance of the decision of treatment being left 276 00:16:29,720 --> 00:16:33,120 Speaker 2: in the hands of the patient and the doctor and 277 00:16:33,720 --> 00:16:37,880 Speaker 2: not the insurance companies, or all of these steps that 278 00:16:37,920 --> 00:16:40,200 Speaker 2: you have to take that you really have to consider. 279 00:16:40,360 --> 00:16:43,680 Speaker 2: Especially being a woman and of child bearing age. There's 280 00:16:43,680 --> 00:16:46,200 Speaker 2: so much that you have to consider when it comes 281 00:16:46,200 --> 00:16:48,320 Speaker 2: to some of those lower treatments that they want you 282 00:16:48,360 --> 00:16:52,200 Speaker 2: to try before you get to the more expensive ones. So, yeah, 283 00:16:52,320 --> 00:16:56,480 Speaker 2: that was a lot of my work explaining how the 284 00:16:56,560 --> 00:16:59,400 Speaker 2: experience of siasis is and what it is to live 285 00:16:59,440 --> 00:17:03,520 Speaker 2: with it and then also expressing the importance of those 286 00:17:03,560 --> 00:17:07,280 Speaker 2: treatment decisions being left between the patient and their doctor. 287 00:17:08,160 --> 00:17:10,960 Speaker 1: Amazing. You have done so much amazing work And you 288 00:17:11,040 --> 00:17:14,080 Speaker 1: mentioned a moment ago the National Crisis Foundation. You know, 289 00:17:14,119 --> 00:17:17,679 Speaker 1: we did an episode about Beverly Foster who started the 290 00:17:17,720 --> 00:17:21,880 Speaker 1: National Crisis Foundation just in her living room in Portland. 291 00:17:22,000 --> 00:17:24,120 Speaker 1: But now it's a huge thing, and I know you 292 00:17:24,200 --> 00:17:27,600 Speaker 1: have received awards for your work with them. What do 293 00:17:27,640 --> 00:17:31,320 Speaker 1: you wish people knew more about regarding what that organization 294 00:17:31,400 --> 00:17:31,919 Speaker 1: can offer? 295 00:17:32,760 --> 00:17:37,920 Speaker 2: Yes, So the National Crisis Foundation has so many great programs. 296 00:17:37,960 --> 00:17:42,359 Speaker 2: They have patient led research. They have something that's called 297 00:17:42,640 --> 00:17:46,800 Speaker 2: Citizens Scientists. Whereas this platform you can create an account 298 00:17:46,960 --> 00:17:49,879 Speaker 2: and you can go in and answer fifty different questions 299 00:17:49,960 --> 00:17:55,160 Speaker 2: about your experience with living with crisis, whether it's emotional, environmental, 300 00:17:55,240 --> 00:17:58,679 Speaker 2: or physical. And then you're able to compare your data 301 00:17:58,720 --> 00:18:02,440 Speaker 2: to other people living with so you may stay to yourself, Oh, 302 00:18:02,760 --> 00:18:06,159 Speaker 2: let me see are there differences with people living with 303 00:18:06,200 --> 00:18:09,919 Speaker 2: ciriasis in the Midwest versus the South because of the weather. 304 00:18:10,359 --> 00:18:12,840 Speaker 2: And you are able to compare that data and it 305 00:18:13,000 --> 00:18:15,600 Speaker 2: really can empower you and help you learn more about 306 00:18:15,640 --> 00:18:18,399 Speaker 2: your disease and what may or may not help, or 307 00:18:18,440 --> 00:18:22,639 Speaker 2: the triggers that you may experience. They also have the 308 00:18:22,680 --> 00:18:26,880 Speaker 2: Patient Navigation Center, which is amazing. I wish I would 309 00:18:26,920 --> 00:18:29,080 Speaker 2: have had something like that when I was growing up 310 00:18:29,080 --> 00:18:32,320 Speaker 2: with sariasis. But it's a hotline that you can call 311 00:18:32,600 --> 00:18:35,480 Speaker 2: and you talk to someone who's living with ciasis and 312 00:18:35,480 --> 00:18:38,439 Speaker 2: they give you all types of resources and connect you 313 00:18:38,520 --> 00:18:43,320 Speaker 2: with doctors who specifically treat crisis and have a lot 314 00:18:43,320 --> 00:18:46,920 Speaker 2: of experience with dealing with it. And so the work 315 00:18:46,920 --> 00:18:50,959 Speaker 2: that the National Psoriasis Foundation does for those living with 316 00:18:51,040 --> 00:18:55,240 Speaker 2: the condition are endless. They're always coming up with new 317 00:18:55,280 --> 00:18:58,160 Speaker 2: ways on how to support the community, and so I'm 318 00:18:58,200 --> 00:19:03,160 Speaker 2: really proud of being part of that organization and grateful 319 00:19:03,640 --> 00:19:06,159 Speaker 2: that they've recognized my work over the years. 320 00:19:06,520 --> 00:19:09,680 Speaker 1: What are you writing about and speaking about most these 321 00:19:09,760 --> 00:19:12,560 Speaker 1: days in terms of your advocacy. What's the kind of 322 00:19:12,600 --> 00:19:14,720 Speaker 1: priority right now in top of mind when you go 323 00:19:14,800 --> 00:19:16,520 Speaker 1: to work on these things? 324 00:19:17,080 --> 00:19:22,960 Speaker 2: You know, the priority is always mental health, It's always 325 00:19:23,320 --> 00:19:29,280 Speaker 2: diversity and our resources, and in research, it's really important 326 00:19:29,280 --> 00:19:34,120 Speaker 2: to me top of mind. So often when research occurs, 327 00:19:34,600 --> 00:19:38,320 Speaker 2: the black experience is not captured in that. One example 328 00:19:38,400 --> 00:19:41,960 Speaker 2: I always like to use is treatment for the scap. 329 00:19:42,119 --> 00:19:45,240 Speaker 2: You know, we don't typically wash our hair every day 330 00:19:45,480 --> 00:19:49,280 Speaker 2: as black people, and so often we're given shampoos to 331 00:19:49,320 --> 00:19:52,520 Speaker 2: treat our hair that requires use every single day. That 332 00:19:52,680 --> 00:19:56,280 Speaker 2: is a reflection of the lack of research and us 333 00:19:56,320 --> 00:19:59,400 Speaker 2: being involved in that, because if we were involved in that, 334 00:20:00,200 --> 00:20:03,320 Speaker 2: have treatments and access to those kind of things that 335 00:20:03,720 --> 00:20:09,160 Speaker 2: would better fit our cultural experience. So mental health and 336 00:20:09,200 --> 00:20:14,720 Speaker 2: diversity and research is one of my top top goals. 337 00:20:15,119 --> 00:20:18,120 Speaker 1: There is obviously still work to do, and I'm so 338 00:20:18,240 --> 00:20:21,040 Speaker 1: impressed by you and so glad that you're doing it 339 00:20:21,080 --> 00:20:23,800 Speaker 1: and people have you as a resource. But next time, 340 00:20:23,800 --> 00:20:25,600 Speaker 1: I want to take us back a few decades, not 341 00:20:25,840 --> 00:20:29,000 Speaker 1: that long ago in terms of history and talk about 342 00:20:29,359 --> 00:20:32,760 Speaker 1: where we have come from when it comes to chronic illness, 343 00:20:32,880 --> 00:20:36,520 Speaker 1: disability and civil rights. And I'm so lucky we have 344 00:20:36,600 --> 00:20:55,399 Speaker 1: somebody here who knows. Congress. Yes, Alicia, I want to 345 00:20:55,440 --> 00:20:58,760 Speaker 1: read you parts of a letter and talk about its contents. 346 00:20:59,520 --> 00:21:02,760 Speaker 1: This letter is dated July seventh, nineteen eighty nine, and 347 00:21:02,800 --> 00:21:05,840 Speaker 1: it's from a car dealership in the United Kingdom and 348 00:21:05,880 --> 00:21:09,200 Speaker 1: it's actually signed by the general manager. This is a 349 00:21:09,280 --> 00:21:13,400 Speaker 1: termination letter. It is addressed to a salesman who had 350 00:21:13,480 --> 00:21:17,919 Speaker 1: just disclosed to the company that he had psoriasis. And 351 00:21:18,000 --> 00:21:22,040 Speaker 1: this letter is really polite. It feels almost strange when 352 00:21:22,040 --> 00:21:27,000 Speaker 1: you consider its contents. It opens with quote, further to 353 00:21:27,119 --> 00:21:31,520 Speaker 1: our discussion yesterday, I must, with regret, confirm the termination 354 00:21:31,640 --> 00:21:35,680 Speaker 1: of your employment. And then the closing is best wishes 355 00:21:35,680 --> 00:21:39,359 Speaker 1: for the future. And in between that opening and that closing, 356 00:21:40,000 --> 00:21:43,120 Speaker 1: the general manager lays out his reasoning for why he's 357 00:21:43,200 --> 00:21:46,680 Speaker 1: terminating this employee, and he writes that the salesman didn't 358 00:21:46,720 --> 00:21:50,800 Speaker 1: disclose his condition during his interview, as though that was 359 00:21:50,880 --> 00:21:55,240 Speaker 1: somehow his responsibility. And this general manager writes, quote, selling 360 00:21:55,280 --> 00:21:59,000 Speaker 1: cars requires you to have reasonably close contact with customers, 361 00:21:59,280 --> 00:22:03,359 Speaker 1: and unfortunately, the symptoms of siasis could be considered to 362 00:22:03,359 --> 00:22:09,040 Speaker 1: be contagious to the uninformed. So he's acknowledging that it's 363 00:22:09,080 --> 00:22:12,800 Speaker 1: not contagious. He knows that, but he's saying that customers 364 00:22:12,880 --> 00:22:16,560 Speaker 1: might think it is, and that thus the burden is 365 00:22:16,640 --> 00:22:19,560 Speaker 1: still on the person with the condition. So that's enough 366 00:22:19,600 --> 00:22:23,040 Speaker 1: for termination. And he notes that they had actually considered 367 00:22:23,040 --> 00:22:26,560 Speaker 1: firing this man earlier, but they waited quote in the 368 00:22:26,600 --> 00:22:29,760 Speaker 1: hope that it would resolve itself. And then he also 369 00:22:29,840 --> 00:22:33,240 Speaker 1: concedes that this person would have made a good salesman, 370 00:22:34,960 --> 00:22:39,600 Speaker 1: but not good enough to overcome having soorriasis. Apparently, and 371 00:22:39,680 --> 00:22:42,119 Speaker 1: the man who received this letter shared it with the 372 00:22:42,200 --> 00:22:46,359 Speaker 1: Siasis and Soriatic Arthritis Alliance, that's a UK based organization 373 00:22:46,920 --> 00:22:50,320 Speaker 1: that offers soriatic disease support. And he asked one question 374 00:22:50,400 --> 00:22:53,440 Speaker 1: along with it, which was, I do wonder if anything 375 00:22:53,520 --> 00:22:57,280 Speaker 1: has changed In nineteen eighty nine, when this letter was written, 376 00:22:57,320 --> 00:23:00,600 Speaker 1: there was no UK law that would have protect him. 377 00:23:01,200 --> 00:23:04,280 Speaker 1: It wasn't until nineteen ninety five that the UK finally 378 00:23:04,320 --> 00:23:08,080 Speaker 1: passed the Disability Discrimination Act that made it illegal for 379 00:23:08,119 --> 00:23:11,679 Speaker 1: an employee to fire someone because of a disability, and 380 00:23:11,720 --> 00:23:14,920 Speaker 1: then that law was eventually folded into a broader law, 381 00:23:15,000 --> 00:23:17,920 Speaker 1: the Equality Act of twenty ten, and that's still what's 382 00:23:17,960 --> 00:23:20,720 Speaker 1: on the books today. Here's the part of this story 383 00:23:20,720 --> 00:23:23,560 Speaker 1: that I really love. When the British government wrote the 384 00:23:23,600 --> 00:23:28,240 Speaker 1: official guidelines explaining who the Equality Act protects, they actually 385 00:23:28,800 --> 00:23:31,880 Speaker 1: reached for soriasis as one of the go to examples, 386 00:23:32,200 --> 00:23:36,000 Speaker 1: specifically siriasis. So the man who got that termination letter 387 00:23:36,080 --> 00:23:38,800 Speaker 1: in nineteen eighty nine, if his employer tried to pull 388 00:23:38,840 --> 00:23:41,199 Speaker 1: that move today, he would have a clear path to 389 00:23:41,280 --> 00:23:44,679 Speaker 1: a tribunal and he would very likely win it, but 390 00:23:44,760 --> 00:23:46,919 Speaker 1: it took a while to get there. And on this 391 00:23:47,040 --> 00:23:49,480 Speaker 1: side of the Atlantic, we have our own journey to 392 00:23:49,560 --> 00:23:52,800 Speaker 1: go on to get these kinds of protection. So the 393 00:23:52,840 --> 00:23:56,440 Speaker 1: good thing is, yes, legally things have changed. People can 394 00:23:56,480 --> 00:24:01,240 Speaker 1: obviously still be absolutely awful about siriasis and honestly any 395 00:24:01,480 --> 00:24:05,720 Speaker 1: visible disability or even just perceived imperfection. But some of 396 00:24:05,720 --> 00:24:09,320 Speaker 1: the ways that people are awful about psoriasis, like firing 397 00:24:09,359 --> 00:24:12,399 Speaker 1: a person, are thankfully illegal now. And we're going to 398 00:24:12,400 --> 00:24:16,040 Speaker 1: talk about how that happened. So let's go back further 399 00:24:16,160 --> 00:24:18,480 Speaker 1: than nineteen eighty nine, because in the United States, the 400 00:24:18,600 --> 00:24:21,960 Speaker 1: law that would eventually make a termination letter like that 401 00:24:22,119 --> 00:24:25,199 Speaker 1: illegal again in the US, though, didn't just drop out 402 00:24:25,240 --> 00:24:27,520 Speaker 1: of the sky in the nineteen nineties. It was actually 403 00:24:27,600 --> 00:24:30,040 Speaker 1: the end of a long chain of events that actually 404 00:24:30,760 --> 00:24:34,960 Speaker 1: really got cooken in the nineteen sixties. The Civil Rights 405 00:24:34,960 --> 00:24:37,720 Speaker 1: Act of nineteen sixty four was really a watershed moment 406 00:24:37,800 --> 00:24:42,560 Speaker 1: in American history because it prohibited discrimination on the basis 407 00:24:42,640 --> 00:24:47,840 Speaker 1: of race, sex, religion, and national origin, but chronic illness 408 00:24:48,200 --> 00:24:53,600 Speaker 1: visible skin conditions. Workers with psoriasis were largely unprotected in 409 00:24:53,680 --> 00:24:58,400 Speaker 1: private employment, and the Rehabilitation Act of nineteen seventy three helped. 410 00:24:58,680 --> 00:25:03,440 Speaker 1: It prohibited discriminate in federal employment and in programs receiving 411 00:25:03,520 --> 00:25:09,000 Speaker 1: federal funding, but that legislation did not reach or impact 412 00:25:09,080 --> 00:25:13,080 Speaker 1: most private employers. So for decades the calculus was very 413 00:25:13,119 --> 00:25:16,720 Speaker 1: simple and quite brutal. If your employer saw something about 414 00:25:16,800 --> 00:25:19,960 Speaker 1: you they didn't like, perhaps a flare up of a 415 00:25:20,040 --> 00:25:23,719 Speaker 1: chronic condition, there was very little standing between you and 416 00:25:23,760 --> 00:25:28,360 Speaker 1: the door. Alicia, when you are out speaking, presenting, advocating, 417 00:25:29,040 --> 00:25:33,040 Speaker 1: do you find yourself in conversation across chronic illness and 418 00:25:33,040 --> 00:25:35,400 Speaker 1: disability communities not just psoriasis? 419 00:25:36,480 --> 00:25:37,560 Speaker 2: Absolutely? 420 00:25:37,920 --> 00:25:38,120 Speaker 1: Yeah. 421 00:25:38,480 --> 00:25:42,440 Speaker 2: And most of us don't just have one outoimmune disease, right, 422 00:25:42,640 --> 00:25:46,920 Speaker 2: We have several diseases, or if you only have one, 423 00:25:47,240 --> 00:25:50,480 Speaker 2: you know another one is just around the corner. And 424 00:25:51,119 --> 00:25:54,480 Speaker 2: to be honest, all of us want the same thing, 425 00:25:55,000 --> 00:25:58,399 Speaker 2: but we just may need it in different ways, tailor 426 00:25:58,560 --> 00:26:03,720 Speaker 2: customized ways. But the bottom line is we all desire 427 00:26:03,800 --> 00:26:06,600 Speaker 2: the same things, even whether or not it's a visible 428 00:26:06,800 --> 00:26:13,399 Speaker 2: disease or a non visible disease. There's an underlining similarity 429 00:26:13,880 --> 00:26:16,840 Speaker 2: and the challenges we face and the things that we 430 00:26:16,880 --> 00:26:19,840 Speaker 2: need from the world around us, Whether it's family, friends, 431 00:26:19,960 --> 00:26:24,639 Speaker 2: co workers, healthcare. We all relate, so it really takes 432 00:26:24,680 --> 00:26:28,119 Speaker 2: the job of all of us. When one disease group 433 00:26:28,240 --> 00:26:32,480 Speaker 2: goes to Congress to speak, they are speaking for everybody 434 00:26:32,560 --> 00:26:35,680 Speaker 2: who has a chronic illness in some way. So it's 435 00:26:35,880 --> 00:26:39,439 Speaker 2: very important and honestly, you can't do the work without 436 00:26:39,960 --> 00:26:42,520 Speaker 2: cross advocating with other conditions. 437 00:26:43,040 --> 00:26:45,720 Speaker 1: I love it. There are some good bright spots to 438 00:26:45,760 --> 00:26:49,320 Speaker 1: talk about here. So the Americans with Disability Act of 439 00:26:49,400 --> 00:26:52,800 Speaker 1: nineteen ninety was, of course a turning point, certainly not 440 00:26:53,080 --> 00:26:55,800 Speaker 1: an ending, but it was a very big deal to 441 00:26:55,960 --> 00:26:59,879 Speaker 1: Under the EIGHTA, employers with fifteen or more employees can 442 00:27:00,240 --> 00:27:04,919 Speaker 1: no longer discriminate against qualified individuals with disabilities. And the 443 00:27:04,960 --> 00:27:08,640 Speaker 1: definition of disability in this legislation is quite broad. It's 444 00:27:08,720 --> 00:27:12,719 Speaker 1: a physical or mental impairment that substantially limits one or 445 00:27:12,800 --> 00:27:17,600 Speaker 1: more major life activities. And the EEOC, that's the Equal 446 00:27:17,640 --> 00:27:22,199 Speaker 1: Employment Opportunity Commission, was empowered to investigate and litigate on 447 00:27:22,280 --> 00:27:27,600 Speaker 1: behalf of workers who experienced discrimination. But the question arose, 448 00:27:27,640 --> 00:27:31,639 Speaker 1: did psiasis qualify? And that question was not settled just 449 00:27:31,640 --> 00:27:34,119 Speaker 1: because the ADA passed. It actually had to be argued 450 00:27:34,200 --> 00:27:36,840 Speaker 1: in court, and the defining case for all of this 451 00:27:37,119 --> 00:27:40,679 Speaker 1: came in nineteen ninety eight, so Catherine Sayers was a 452 00:27:40,800 --> 00:27:45,240 Speaker 1: nurse in Ohio. She had lived with chronic generalized pustular 453 00:27:45,280 --> 00:27:49,280 Speaker 1: psoriasis for thirty years, and her employer, a long term 454 00:27:49,320 --> 00:27:53,879 Speaker 1: care facility, terminated her. They issued distermination on a claim 455 00:27:53,960 --> 00:27:57,240 Speaker 1: of paperwork not being filed correctly for a leave of absence. 456 00:27:57,600 --> 00:28:01,120 Speaker 1: But this case was really about whether she was actually 457 00:28:01,119 --> 00:28:04,639 Speaker 1: missing work due to her disability, and the company argued 458 00:28:04,640 --> 00:28:08,800 Speaker 1: that her psoriasis was only a disability during flare ups 459 00:28:08,920 --> 00:28:12,960 Speaker 1: and therefore was not a continuous impairment that counted under 460 00:28:13,000 --> 00:28:16,479 Speaker 1: the ADA. This is worth sitting with for a second. 461 00:28:17,400 --> 00:28:22,240 Speaker 1: That employer's position was essentially that disease doesn't count if 462 00:28:22,280 --> 00:28:26,640 Speaker 1: we can't see it right now. So the suffering that 463 00:28:26,680 --> 00:28:30,919 Speaker 1: we know happens between flares, the pain, the medication, fear, 464 00:28:31,320 --> 00:28:34,919 Speaker 1: constantly managing your symptoms and well being, none of that 465 00:28:35,760 --> 00:28:39,480 Speaker 1: rose to the level of a disability worth protecting. Isn't 466 00:28:39,480 --> 00:28:42,840 Speaker 1: this kind of indicative? About very very long we didn't 467 00:28:42,880 --> 00:28:48,280 Speaker 1: even realize what an autoimmune illness even was. Right this 468 00:28:48,440 --> 00:28:51,240 Speaker 1: was going on in nineteen ninety eight, so less than 469 00:28:51,240 --> 00:28:55,040 Speaker 1: thirty years ago, people still didn't understand. They literally just 470 00:28:55,120 --> 00:28:57,360 Speaker 1: thought you had bad skin. Sometimes. 471 00:28:58,360 --> 00:29:05,600 Speaker 2: Yeah, logic res uh huh, you weren't bathing correctly or dirty, 472 00:29:06,040 --> 00:29:10,480 Speaker 2: you know, is wild. Yeah. I think about the first 473 00:29:10,520 --> 00:29:13,719 Speaker 2: person who had sarises hundreds of years ago and they 474 00:29:13,720 --> 00:29:16,400 Speaker 2: thought it was leprosy or something contagious. 475 00:29:16,600 --> 00:29:16,959 Speaker 1: Yeah. 476 00:29:17,000 --> 00:29:21,479 Speaker 2: And you have some people in other countries where they 477 00:29:21,520 --> 00:29:25,080 Speaker 2: don't have the advancements, they still feel that way, They 478 00:29:25,160 --> 00:29:27,680 Speaker 2: still have those assumptions. It's so sad. 479 00:29:27,800 --> 00:29:29,880 Speaker 1: The good news is that the Sixth Circuit Court of 480 00:29:29,880 --> 00:29:34,120 Speaker 1: Appeals disagreed without false logic. That court found that Catherine 481 00:29:34,160 --> 00:29:38,480 Speaker 1: Sayers experienced pain even during the dormant phases of her disease, 482 00:29:39,160 --> 00:29:42,640 Speaker 1: that she required weekly medication even when there were no 483 00:29:42,760 --> 00:29:46,680 Speaker 1: plaques visible, that the treatment itself, which sometimes caused hair 484 00:29:46,760 --> 00:29:50,720 Speaker 1: loss and skin peeling, was part of what made her disabled, 485 00:29:50,960 --> 00:29:54,960 Speaker 1: and crucially, that the persistent fear of other people's reactions 486 00:29:55,040 --> 00:29:59,360 Speaker 1: to her condition, was part of her daily burden. What 487 00:29:59,480 --> 00:30:02,640 Speaker 1: is necess to control the condition, the court wrote in 488 00:30:02,680 --> 00:30:06,640 Speaker 1: its decision, may be part of what makes the person disabled. 489 00:30:07,440 --> 00:30:11,080 Speaker 1: So that ruling established something really really important, which I 490 00:30:11,240 --> 00:30:16,400 Speaker 1: of course I'm sure you recognize. Chronic illness disability waxes 491 00:30:16,520 --> 00:30:20,479 Speaker 1: and wanes. This is a condition that shapes a person's life, 492 00:30:20,560 --> 00:30:24,040 Speaker 1: including their work life, And finally the law recognized that. 493 00:30:25,120 --> 00:30:27,480 Speaker 1: I want to talk to you about the numbers. Between 494 00:30:27,520 --> 00:30:30,520 Speaker 1: two thousand and three and twenty eleven, the National Psoriasis 495 00:30:30,600 --> 00:30:34,440 Speaker 1: Foundation conducted surveys of more than five thousand patients, and 496 00:30:34,440 --> 00:30:39,040 Speaker 1: here is what they found. Twelve percent of respondents were unemployed. 497 00:30:40,000 --> 00:30:42,920 Speaker 1: Of those who were out of work, ninety two percent 498 00:30:43,040 --> 00:30:47,479 Speaker 1: said priasis or soriatic arthritis was the sole reason that 499 00:30:47,520 --> 00:30:50,800 Speaker 1: they were not working. And among people who were employed, 500 00:30:50,880 --> 00:30:54,160 Speaker 1: forty nine percent of them regularly missed workdays because of 501 00:30:54,200 --> 00:30:58,640 Speaker 1: their condition. Patients with severe psoriasis were one point eight 502 00:30:58,680 --> 00:31:02,760 Speaker 1: times more likely to be unemployed than those with mild disease, 503 00:31:02,960 --> 00:31:06,560 Speaker 1: even after you factored in age and gender to kind 504 00:31:06,560 --> 00:31:09,440 Speaker 1: of level out the data playing field. But the number 505 00:31:09,520 --> 00:31:12,680 Speaker 1: that stops me every time is this one. And I 506 00:31:12,720 --> 00:31:16,200 Speaker 1: think this will ring familiar to you and probably a 507 00:31:16,200 --> 00:31:21,280 Speaker 1: lot of other people. Eighty three percent of patients reported 508 00:31:21,400 --> 00:31:25,120 Speaker 1: actively concealing the physical signs of their disease. And it 509 00:31:25,160 --> 00:31:28,040 Speaker 1: goes back to what you were talking about earlier about 510 00:31:28,360 --> 00:31:32,680 Speaker 1: shame over something that is nothing you have done. Eighty 511 00:31:32,720 --> 00:31:36,240 Speaker 1: three percent, So that is not a choice that people 512 00:31:36,280 --> 00:31:38,840 Speaker 1: are making lightly. It's a lot of work to conceal this. 513 00:31:39,000 --> 00:31:42,720 Speaker 1: It becomes a survival strategy, and it's built, of course, 514 00:31:42,840 --> 00:31:45,840 Speaker 1: from years of experience of how the world will respond 515 00:31:45,880 --> 00:31:49,560 Speaker 1: to visible skin disease, but it's built from that exact 516 00:31:49,640 --> 00:31:52,200 Speaker 1: kind of discrimination that we have been talking about. I'm 517 00:31:52,240 --> 00:31:54,400 Speaker 1: curious because I see you nodding, and I know this 518 00:31:54,440 --> 00:31:57,040 Speaker 1: is probably hitting you. What are those numbers bring up 519 00:31:57,040 --> 00:31:59,920 Speaker 1: for you? I think it's really important. It illustrates to 520 00:32:00,040 --> 00:32:03,600 Speaker 1: people that don't have psoriasis, but also probably is oddly 521 00:32:03,640 --> 00:32:08,000 Speaker 1: reassuring in some way the people know just how much 522 00:32:08,040 --> 00:32:10,880 Speaker 1: of this is a burden to a lot of people 523 00:32:10,920 --> 00:32:14,200 Speaker 1: living with sooriasis, and how much you have to navigate 524 00:32:14,240 --> 00:32:15,200 Speaker 1: every single day. 525 00:32:16,560 --> 00:32:19,320 Speaker 2: Something you just said that really resonated with me is 526 00:32:19,360 --> 00:32:21,880 Speaker 2: when you said it's a lot of hard work to conceal. 527 00:32:22,960 --> 00:32:26,040 Speaker 2: It is because you not only have to worry about 528 00:32:26,800 --> 00:32:31,440 Speaker 2: the physical, visible part of sooriasis, you also shed skin. 529 00:32:32,440 --> 00:32:36,640 Speaker 2: So I remember being in college and having to share 530 00:32:36,760 --> 00:32:39,360 Speaker 2: a restroom and you know this is so vulnerable and 531 00:32:39,400 --> 00:32:45,000 Speaker 2: so intimate, but making sure flakes weren't on the toilet 532 00:32:45,080 --> 00:32:49,240 Speaker 2: seat or around the sink and having to clean that 533 00:32:49,360 --> 00:32:54,160 Speaker 2: up and just having to overthink. So you are always 534 00:32:54,280 --> 00:32:58,040 Speaker 2: thinking three steps ahead when you're living with soriasis as 535 00:32:58,120 --> 00:33:01,160 Speaker 2: to how to avoid embarrassment always. 536 00:33:01,520 --> 00:33:03,720 Speaker 1: That's a lot of mental burden to live with every 537 00:33:03,760 --> 00:33:08,760 Speaker 1: single day. It's a lot. Moving back to the legislation 538 00:33:08,800 --> 00:33:13,320 Speaker 1: that's developed around this, the legal framework to protect people 539 00:33:13,360 --> 00:33:17,720 Speaker 1: with psoriasis and other disabilities has continued to strengthen since 540 00:33:17,760 --> 00:33:21,280 Speaker 1: the Sayer's case. The EIGHTA Amendments Act of two thousand 541 00:33:21,280 --> 00:33:26,240 Speaker 1: and eight significantly expanded the definition of disability, specifically to 542 00:33:26,360 --> 00:33:30,800 Speaker 1: include impairments affecting the immune system. The law now more 543 00:33:30,920 --> 00:33:35,640 Speaker 1: explicitly covers people whose condition is intermittent, who experience flares 544 00:33:35,680 --> 00:33:39,880 Speaker 1: and remission rather than a constant, visible impairment. And the 545 00:33:39,880 --> 00:33:43,320 Speaker 1: Family in Medical Leave Act protects eligible workers right to 546 00:33:43,480 --> 00:33:47,480 Speaker 1: take up to twelve weeks of unpaid job protected leave 547 00:33:47,520 --> 00:33:52,720 Speaker 1: each year for medical conditions, including siriasis treatment and doctor appointments. 548 00:33:53,320 --> 00:33:57,040 Speaker 1: And the National Poriasis Foundation now operates, as you mentioned, 549 00:33:57,360 --> 00:34:02,280 Speaker 1: a patient navigation center specifically to help people understand and 550 00:34:02,960 --> 00:34:06,680 Speaker 1: to help them exercise their rights as employees. So this 551 00:34:06,760 --> 00:34:09,680 Speaker 1: is such a reminder that our political process really can 552 00:34:10,239 --> 00:34:12,840 Speaker 1: at times make progress for us, and it needs people 553 00:34:12,920 --> 00:34:16,760 Speaker 1: like you, Alicia, going to Capitol Hill telling your story, 554 00:34:16,960 --> 00:34:21,760 Speaker 1: educating people and politicians. We're obviously still not done. People 555 00:34:21,800 --> 00:34:25,440 Speaker 1: with psoriasis still report discrimination. It's not like that magically 556 00:34:25,480 --> 00:34:29,520 Speaker 1: goes away because there's a legal recognition. Still report feeling 557 00:34:29,600 --> 00:34:32,400 Speaker 1: like they need to hide. There are social mores and 558 00:34:32,480 --> 00:34:36,040 Speaker 1: biases always in play. The gap between what the law 559 00:34:36,120 --> 00:34:39,000 Speaker 1: says and what daily working life feels like is still 560 00:34:39,120 --> 00:34:43,480 Speaker 1: very very real. And Alicia, you are in a long 561 00:34:43,600 --> 00:34:46,759 Speaker 1: line of advocates. Do you feel a kinship with the 562 00:34:46,800 --> 00:34:50,560 Speaker 1: people who got involved in getting this legislation passed? 563 00:34:51,400 --> 00:34:55,799 Speaker 2: Absolutely, It's so important. Sometimes we just have to plan 564 00:34:55,880 --> 00:34:58,840 Speaker 2: a seed, you know, not to refer to plants again, 565 00:34:59,239 --> 00:35:02,000 Speaker 2: and then it just goes from there because the more 566 00:35:02,800 --> 00:35:07,720 Speaker 2: laws that are in place that helps fight against discrimination, 567 00:35:08,440 --> 00:35:13,920 Speaker 2: the more people who know about psariasis, all of those 568 00:35:13,960 --> 00:35:19,319 Speaker 2: things really help us to feel seen, to feel understood, 569 00:35:19,640 --> 00:35:22,560 Speaker 2: and to get the support and accommodations that we need 570 00:35:23,040 --> 00:35:25,719 Speaker 2: in the understanding and the empathy that we need when 571 00:35:25,760 --> 00:35:29,360 Speaker 2: we're living with this condition. So I definitely feel a kinship. 572 00:35:29,840 --> 00:35:32,759 Speaker 2: It all points to the work that we need done 573 00:35:33,239 --> 00:35:34,000 Speaker 2: for this condition. 574 00:35:34,360 --> 00:35:39,879 Speaker 1: Yeah, I imagine it reduces even incrementally all of that 575 00:35:39,960 --> 00:35:42,879 Speaker 1: mental load that we were talking about just a little 576 00:35:42,880 --> 00:35:44,880 Speaker 1: while ago. It's one less thing that you have to 577 00:35:45,560 --> 00:35:46,800 Speaker 1: worry about all the time. 578 00:35:47,000 --> 00:35:47,480 Speaker 2: Yeah. 579 00:35:47,680 --> 00:35:49,879 Speaker 1: I have two more questions for you today. We ask 580 00:35:49,960 --> 00:35:52,239 Speaker 1: these at the end of every episode of all of 581 00:35:52,280 --> 00:35:57,839 Speaker 1: our guests. Are you ready okay? It first is what 582 00:35:58,000 --> 00:36:01,680 Speaker 1: suggestions do you have for people who maybe don't have 583 00:36:01,760 --> 00:36:05,440 Speaker 1: soriasis themselves, but they have a loved one who does. 584 00:36:06,200 --> 00:36:09,239 Speaker 2: So if you don't have soriasis yourself, but you have 585 00:36:09,320 --> 00:36:11,520 Speaker 2: a loved one who does, there are a few things 586 00:36:11,560 --> 00:36:15,640 Speaker 2: that you can do. One look up experiences through social media. 587 00:36:15,840 --> 00:36:19,799 Speaker 2: Use hashtags like soriasis and chronic illness, and it would 588 00:36:19,840 --> 00:36:23,240 Speaker 2: definitely lead you to pages and videos of people living 589 00:36:23,280 --> 00:36:26,640 Speaker 2: with the condition sharing their story. I think that's really 590 00:36:26,680 --> 00:36:30,680 Speaker 2: important because sometimes living with the condition, we feel shame 591 00:36:30,840 --> 00:36:34,399 Speaker 2: even with telling our friends and family. So it's really 592 00:36:34,440 --> 00:36:37,919 Speaker 2: good if you can see somebody else's experience. I would 593 00:36:37,960 --> 00:36:44,880 Speaker 2: also say ask questions come in a empathetic way. Be curious, 594 00:36:45,400 --> 00:36:48,880 Speaker 2: asks a person what their experience is like. If you 595 00:36:48,960 --> 00:36:51,800 Speaker 2: have a kid living with pariasis, it's not good enough 596 00:36:52,040 --> 00:36:55,000 Speaker 2: just to say, hey, how does school go? You have 597 00:36:55,080 --> 00:36:58,359 Speaker 2: to get really specific in saying, hey, does anybody ever 598 00:36:58,640 --> 00:37:01,880 Speaker 2: say anything about your sarriat? And I really think asking 599 00:37:01,920 --> 00:37:05,520 Speaker 2: those type of questions will open up a world that 600 00:37:05,600 --> 00:37:08,839 Speaker 2: you had no idea existed with your friend or loved one. 601 00:37:09,760 --> 00:37:13,239 Speaker 1: That's really good advice. Last, but not least, if you 602 00:37:13,280 --> 00:37:16,520 Speaker 1: could send one message to our listeners that maybe are 603 00:37:16,840 --> 00:37:19,840 Speaker 1: grappling with their own diagnosis, they have just recently found 604 00:37:19,840 --> 00:37:23,759 Speaker 1: out that they have psoriasis. What would that advice be 605 00:37:24,560 --> 00:37:27,359 Speaker 1: or that message even it doesn't have to be advice. 606 00:37:27,680 --> 00:37:32,480 Speaker 2: Make sure you find your tribe, find others living with sariasis, 607 00:37:33,360 --> 00:37:37,440 Speaker 2: because that really helped me. And knowing that you aren't 608 00:37:37,480 --> 00:37:40,799 Speaker 2: alone and meeting other people that have been in the 609 00:37:40,880 --> 00:37:45,839 Speaker 2: journey longer than you or may have a different perspective 610 00:37:46,280 --> 00:37:50,320 Speaker 2: or resources that you don't know about, is really helpful. 611 00:37:50,520 --> 00:37:53,680 Speaker 2: Whether you're clear today, you know your medicine stops working 612 00:37:53,719 --> 00:37:56,520 Speaker 2: and you have a flair a year from now, you're 613 00:37:56,560 --> 00:37:59,640 Speaker 2: gonna go through these difficult situations because that's just how 614 00:37:59,719 --> 00:38:03,480 Speaker 2: crime illness is. It's not fun, it's unpredictable. But at 615 00:38:03,600 --> 00:38:06,520 Speaker 2: least you can have a tribe to support you in 616 00:38:06,600 --> 00:38:10,719 Speaker 2: those moments. And potentially help you with the resources and 617 00:38:10,760 --> 00:38:13,960 Speaker 2: to give you encouragement when you are going through it. 618 00:38:14,040 --> 00:38:16,400 Speaker 2: So that's the advice that I would give to those 619 00:38:16,640 --> 00:38:17,680 Speaker 2: living with ciasis. 620 00:38:18,440 --> 00:38:22,439 Speaker 1: I love it. Alicia Bridges, you are a dream. Thank 621 00:38:22,480 --> 00:38:24,799 Speaker 1: you so much for talking to me today, for being 622 00:38:24,840 --> 00:38:27,759 Speaker 1: so vulnerable, for sharing your story, but also sharing your 623 00:38:27,760 --> 00:38:31,200 Speaker 1: incredible strength and just the way that you have navigated 624 00:38:31,239 --> 00:38:33,920 Speaker 1: it is a great model for other people. So thank you, 625 00:38:33,960 --> 00:38:36,040 Speaker 1: thank you, thank you. We are so thankful to have 626 00:38:36,080 --> 00:38:36,880 Speaker 1: you on Our Skin. 627 00:38:37,920 --> 00:38:40,400 Speaker 2: I appreciate it. Thank you so much for allowing me 628 00:38:40,440 --> 00:38:46,200 Speaker 2: to share my story. 629 00:38:48,120 --> 00:38:51,719 Speaker 1: Our Skin is hosted by myself, Holly Fry and executive 630 00:38:51,760 --> 00:38:55,680 Speaker 1: produced and engineered by Ryan Martz. Our executive producer and 631 00:38:55,719 --> 00:38:59,279 Speaker 1: writer is Meredith Barnes. If you enjoy the show, share 632 00:38:59,280 --> 00:39:01,920 Speaker 1: it with your friend. You can also listen and follow 633 00:39:02,120 --> 00:39:05,520 Speaker 1: on the iHeartRadio app, Apple Podcasts, or wherever you get 634 00:39:05,520 --> 00:39:06,439 Speaker 1: your podcasts.