'You’re Not An Island: Dealing With Psoriatic Disease Together' Transcript

LB: My name is LB Herbert and you may recognize my name as I was a guest last December offering tips to deal with holiday stress. It was episode 212. Today I'm here as a moderator to interview an outstanding volunteer and fellow mentor through the Foundation’s One to One peer support program, Ayesha Patrick. I'm excited and honored to be here with Ayesha. She works tirelessly to help the psoriatic disease community. Let's hear more about Ayesha from her directly. 

Ayesha welcome! It’s such a pleasure having you here today! I’ve read your bio and I too have psoriatic disease. I’d love to hear more about your story today, like when you first realized you had psoriasis and how did you feel about that diagnosis?

Ayesha: Well, first, let me just thank you for having me on. I'm really excited to be here and just to share more about my story. I've had psoriasis for my entire life for as long as I can remember and it's been over 40 years now. But when I was younger, it was very, very mild and pretty much manageable. And I'm a twin, so my sister and I both have psoriasis and my mom would always tell us that we had growing dandruff. And that we have winter itch because whenever the weather changed up here in the Northeast (I'm in New Jersey) we would get plaques on our legs. We didn't know they were plaques. We just knew it as winter itch, but mostly it was a lot in our scalp. So she had, like, a regimen for us and everything, and she called it growing dandruff. And I really believe that was to like make us not feel bothered or shamed or embarrassed by it, because we didn't really understand. But it wasn't really much until like later in my life when I was in college that I learned from going to the doctor myself what I actually had, a name to it.

LB: So you've had over your lifetime a variety of types of psoriasis - plaque, inverse, scalp, nail, guttate.  What was that like going from a child to an adult facing all of this?

Ayesha: So as a child it was mild and manageable. So I used topicals and only really dealt with it whenever the weather would change or circumstances would happen. It was very manageable. It wasn't really until the top of the COVID-19 pandemic, 40 years old, where I experienced my major flare up, where I had all of these types of psoriasis all at once. And although I've experienced psoriasis as a child growing up, it was a, I won't call it a 360, it was a 180. I never experienced anything like this in my life. So managing it was not the same. It felt completely different. I felt powerless because it was during the COVID-19 pandemic. So I couldn't go into see my dermatologist. I had to rely on Zoom and showing my body and rely on medication being sent to me in the mail in order to get what I needed. So it was like a completely different experience.

LB: Did you find that had an impact on your life, like your relationship with others, even with your family members? Did it kind of take a turn at that point?

Ayesha: For me, it took a complete turn because I've never experienced it like that before. So I had to rely on my family quite a bit because not only did I experience the plaques all over my body, losing most of my hair, and just like dealing with the emotional impacts of the disease, but I had to also just learn how to work differently and ask for help -- which is foreign to me because I am the person that does everything. But guess what? I was exhausted all the time. I literally was in pain because my skin, it was like burning, itching and I had to really become the person that said to myself, I know that I have this village. I'm gonna use this village because they're here for me, and that was definitely difficult for me and it was new for those in my life because they had never experienced me being this person. A vulnerable person now having to rely on asking for help.

LB: That's awesome that you had your family for support. Was there anything else that you used to help deal with these tough times when you were maybe feeling like you were the only one going through this, especially during COVID when you're isolated a bit as it is?

Ayesha: Absolutely. I literally had to lean in to social media. So I feel like during that time, honestly, everybody did because it was like we're not going anywhere guys. Everybody's in the house. So at that time I started getting connected with a lot of different Facebook groups. I started going on Pinterest, just learning different things but really primarily getting involved with groups. And although I was involved with quite a bit of groups on Facebook with people with living with psoriasis, I've never seen anyone or a lot of people that look like me, a black woman living with psoriasis. And I have a lot of hair on my head now because it's added hair, but I have lost like most of my hair and as a black woman, just like culturally, our hair is our crown. That's what we're told growing up and it's a huge thing. So for a lot of people that might say like “ohh well, it's just hair”. It was very emotional and was something deep for me to lose a lot of my hair and so I wanted to just connect with other people who may have experienced that or even just trying to get tips from other people. So I've relied on groups, but I also at that time got in contact with the National Psoriasis Foundation because outside of talking to my dermatologist on a zoom, I just really needed more support. And although like I said, my sister also has psoriasis, she didn't experience anything like I had experienced. So since it was so new for me in this way, I had to find the resources and between the support from the groups and the National Psoriasis Foundation getting connected through mentorship, getting goodies sent to me in the mail (samples), all those things, I had to rely on those things. And honestly, during that time, it really was my saving grace.

LB: So in addition to psoriasis, I see you're also diagnosed with psoriatic arthritis. I know that impacts your ability to move, pain levels, fatigue. I have psoriatic arthritis myself, so I know what you're going through. What are some of the tips you have for dealing with that and how you might feel better?

Ayesha: I literally, intentionally have to move and some people are like, well, don't you move every day anyway? Well, most times, most days I'm literally fatigued and exhausted. So when I get up and I'm sounding like I call myself the tin man, tin woman, and I can hear every crack, everything. I will sit on the edge of the bed and stretch and that's how I start my days. So stretching has been helpful as far as just getting my joints moving, doing different types of exercises that I absolutely love. So much so that I eventually became a group fitness instructor just to hold myself accountable to making sure that I get the movement in. So a lot of people like “ohh you like, is it weight loss?” Oh weight loss is a benefit, but really getting my body moving because honestly if I don’t it's like starting brand new, almost like a child, taking the first steps, like starting brand new. So being intentional about movement, stretching, just making sure that I get myself going so that I'm not stuck and just being mindful of all of those things as well as some other self care things like massages. That who, who doesn't love a nice, you know, massage?

LB: Yeah, who doesn’t? Anything else that you do? We know stress really impacts the management of psoriasis and psoriatic arthritis. Anything else you do for a little stress relief?

Ayesha: Absolutely. I've been writing since I was a little girl. But I took it to a different place, especially dealing with what I did during the COVID-19 pandemic where I had the worst flare up in my life. I began journaling more and we were just in Austin for the Impact Summit for the National Psoriasis Foundation, and I presented. And on the screen I had a picture of my journals, and it's all a ton of journals and they were so purposeful for so many different reasons. For one, during the pandemic I was writing down all of my symptoms. I was writing down where I noticed new plaques. I was writing down if I noticed like certain things with my scalp or with my nails, like the pitting. Just different things to keep a record of everything, because I eventually knew I would have to go into the office. So I wanted to make sure I kept a journal of those things, but also like emotionally, putting down everything that I was dealing with because, I know that I have support and everything, but being able to use my journal as a safe space for me to kind of like, just unload no matter what, it became so critical and just helpful. And anything that you find that you love and you enjoy, do that thing. So I use what I have always known, writing as a way to really heal myself because stress can lead to worse flares. And I was in my head just like “ohh my gosh all of this is happening. Is it gonna get even worse? What am I gonna do?” And I'll never forget I was standing in the bathroom, clearing out the scales from my scalp. And the door was open. I was standing, looking in the mirror and my daughter (she was a little younger when this happened) but she was standing at the doorway, and she's looking at me and she says, “is that gonna happen to me?” And I said to her, “well, if it does, you see it and I'm OK” and we went about our day. She went to school, but the moment she went to school I broke down. I was just so distraught. I'm crying and everything and I wrote about that, and literally maybe like two or three weeks ago, we were sitting in the car and I said to her, Ava, do you remember everything that happened when I had my bad flare. And she said, yeah, I was scared. And I said, “well, were you, like, you were scared because of what you say you were scared, thinking that this could happen to you?” And she said “no, I was scared because I see how much pain you were in and I see you losing your hair”. So for me, even with the journaling and just how I have been intentional in trying to manage not only the disease but my life, my emotional health, I know that my child is seeing this and if she does eventually have to deal with this or any other chronic condition, she has me as an example to know, hey these things can happen, but you can persevere. You can move through. So my journaling, I wanted to share that part of me with the world. So I ended up creating my own writing journal that I actually have shared on my platform, and it gives you a piece of me, but also something where you are able to work through whatever you're dealing with. 

LB: That's awesome. You tore out this mama's heartstrings right here with that. So you mentioned you reached out to the National Psoriasis Foundation when things got really rough. You alluded to some of this already, but why did you reach out then? You kind of go from a support recipient to a volunteer and giving your support. When did that turn for you? 

Ayesha: So I've always been a person that has given back and done community service, done so many different things. And when I reached out to the National Psoriasis Foundation and not only just like got the support, but really felt like a deep family atmosphere and just connection with those within the Foundation, I knew that I wanted to be a part of that. I wanted to be able to give back to the Foundation because at my lowest point I relied on them and one of the very first people that I connected with was Audrey Riggs and I'm so grateful for Audrey and the others that I have connected with at NPF. And so for me, my involvement really is like a labor of love, of giving back because so much was given to me and I want to be able to do that for others. And I know it's great that there's other Facebook groups and everything, and I also have started my own group, but having the support of NPF who has researchers involved, dermatologists involved, you're able to get accurate information and also the support that you truly need because it can get tricky online with what people are trying to give you or advice, or just misinformation. So knowing that you have a source that is a legitimate source and not only just a legitimate source, but people that truly care and want to be there for you and provide the help you need, and you know that whatever contributions you're giving is going to that cause. It makes a difference cause some people, they're not sure if it's really helping, if it's going towards things. And once I got fully involved, I was able to see for myself “hey, these things are going towards research. These things are going towards supporting patients. These things are going towards lobbying and making sure that we impact the decisions that lawmakers meet in preference to our care. It gave me a deeper passion and desire to really wanna do more.

LB: You have that passion for wanting to help others, and I know you're a One to One volunteer mentor such as myself through National Psoriasis Foundation. It's a great peer support program that matches those in need with someone who's been there. Someone who understands. I know I enjoy participating in it because sometimes patients don't get that support from their doctor or their family and they don't know where to turn. We're able to help give them those resources and lead them in the right direction along with a little moral support and cheering on. What words of encouragement do you give to those individuals that you mentor through the program?

Ayesha: The words of encouragement that I give those in the program is it's OK to ask for help. That for me was the biggest thing because I well, you know, strong Wonder Woman. And there was some days I literally was like, yeah, I can't get up out of bed. I can't do it. But it's OK, it's not a weakness to ask for help. It's actually a sign of strength because you're acknowledging a need and we were not created as humans, in my opinion, to be an island. So we all gain from each other to support each other. So as much as I try to pour into those that I'm mentoring, I'm getting back just as much from them, because guess what? There's things that I can learn from their experience. Our lived experiences matter, and so for me it's been so amazing to connect with so many people across the world. And to know with most people you're able to give them what they need. Some people might not even have friends or family, or anyone that they can connect with, and you can be that source. It's people that's living with chronic conditions that are dealing with some heavy emotional stuff. May not be able to afford medications or may not be able to do certain things. And if you can be the person as a support, that can lead them to whether it’s the patient navigator system or to whatever. If you're just a listening ear at times, I get so much like joy and fulfillment and being able to be that for someone else. 

LB: And I know you realize there were few support opportunities for women of color that have psoriasis or psoriatic arthritis so you created your own group called “Sistas With Psoriasis”. Why was it important for you to create that group, and what's it been like for you in that experience? 

Ayesha: So I first of all, I am like, I love love, love Sistas with Psoriasis. And I always told people, I literally was sitting outside at the park with two of my friends. This was after I had been searching, researching like other people that look like me, trying to see what treatments they were getting because I had a really rough experience with my dermatologist at the time, who wasn't culturally competent, was very dismissive. I had a very poor experience and it led me to finding another dermatologist, and through that whole quest and just trying to like find out from other people “are there any black dermatologist’s you could recommend or other people who might have experienced hair loss or experience the severity of the plaques that I had. I just wanted to learn from them and I could not find a lot of people. I couldn't find a lot of information and I was like there is zero possibility that I'm like one of the few people that are going through this. There has to be more people who are experiencing this and maybe if I don't see it, I'll create it and if people feel safe enough, they might want to join it. And literally, when I was at the park with my two friends, I said I think I'm gonna start a group. And they were like OK so I started

LB: There you are!

Ayesha: right. I started the group and people started joining and it's been amazing because we can learn from each other. It's a supportive environment. We don't give out medical advice or anything like that. It's all about just really support and if there's different tips and everything, we share those because psoriasis looks different on people of color, even the texture of our hair, the stuff that my one dermatologist had prescribed when I looked at what was in it, the shampoo, she told me to use daily, I was like “I know you probably don't wanna, like, acknowledge out loud like I'm a black woman, but I'm a black woman, and we don't wash our hair every day cause some people, might not feel comfortable. But the fact of the matter is, I'm a black woman and I don't wash my hair every single day. The texture of my hair, the maintenance of my hair, I don't do that. So it was difficult to kind of like explain that. If you have a place or a space where people are understanding because it's relatable, then it's easier to kind of just connect with others so that you don't feel alone. So that really was the purpose behind creating Sistas with Psoriasis and it has grown and it has allowed for me to connect with so many other people. I have my website now thepsoriasiscollective.com that is connected to Sistas with Psoriasis that also leads people to the National Psoriasis Foundation for information, but also a black dermatology directory if they want to seek out doctors that are persons of color who might have more cultural competency regarding certain things and our conditions. And it's just been great. I am so grateful for the connections made and just like putting more of an eye on the fact that we're here because even you don't even really see in advertisements, it's a little bit more now, but in advertisements for treatments you don't really see a lot of people of color represented. And also honestly, I am a patient research partner for a clinical trial, but there's not a lot of people of color that participate in clinical trials with regard to skin conditions and it’s mostly fear or you don't see people that look like you or the history of different things that have happened to persons of color within medicine. So if you have whether it's me or someone else that can be the representation of advocacy and making sure that we get what we need, then I am willing to accept that as my life's work within Sistas With Psoriasis.

LB: We can't thank you enough for the support, the education you're giving. Just recognizing psoriasis in skin of color it’s a challenge and just teaching other patients to speak up and maybe how to have those difficult conversations with their doctors. I mean, I'm so glad you're leading the way for this. And I know besides being a volunteer for National Psoriasis Foundation’s One to One program, you're also very involved in advocacy efforts to help educate our state and federal legislative members about policies or benefits for people with psoriasis. What's your experience been in these advocacy roles?

Ayesha: It's been ohh my goodness. Well, during COVID I did my First Capital Hill day online virtually. It was an incredible experience to do it virtually, but even more so wonderful being able to go to DC and do it in person. And I just felt so proud that I was able to go in and be able to impact change to different things. One, a major thing, step therapy in which you have to try and fail first at these medications instead of just getting what you need on the front end and being able to like fully explain and just share directly with those listening in Congress the impact. Emails, all those things work but face to face interaction, a human interaction connection, and just sharing stories. Sharing lived experiences are truly impactful to those who are listening and those that can make those changes. So being able to do that and know that the work that I'm doing, the work that collectively those advocates they are doing is going to help millions of people that we might never ever see is just it's wonderful and such a great experience.

LB: I know you've also shared your story at the National Psoriasis Foundation's Research Symposium. It's an event for the healthcare providers themselves and you shared the perspective from patients about mental health and its impact on psoriatic disease. How important is it to discuss that impact with healthcare providers?

Ayesha: It’s critical. Dealing with psoriatic disease and emotionally it can really take a toll. Like I told you before, when I was younger, my disease was manageable. I was able to only deal with my flares during when the weather changed or I just make sure my hair was a certain way. But when you're dealing with your body being covered and you have to hide yourself, or you feel like you have to hide yourself. Or you're just literally in pain and you don't wanna seem burdensome to your family and friends, or you just don't want to have to explain to someone or wonder why people are staring, it can take a toll. I share with you about my daughter and having to explain to her that if she did have psoriasis that she would be OK. That's a lot for a parent and for some people it is burdensome to know that you have something that you can pass down to your children. So it is very difficult for a lot of people. There were times where I would be so physically exhausted or in so much pain with my joints for my psoriatic arthritis that I didn't get out of bed. I didn't feel like doing anything. I would cry at times on the phone with my sister and I would say why me and just not really understand it. And so it's more than just your skin or your joints, it's a lot with your mental health and you have to have it within you to like push through. And if you don't have the support, that's why there's different organizations like NPF or groups like Sistas With Psoriasis, where you can get the support you need because there are people that are struggling. And oftentimes, because like our doctors in general are so busy, that part might be overlooked. But if there is a way like and we talked about this at this symposium where they recommended having a scale where you talk about your emotions in those appointments because the emotions can contribute to the flare, could contribute to the severity of it. So it's all connected and if there is that piece that is included, it would make such a huge difference. And also those that are like reaching out through the mentorship program, a lot of them are dealing with emotional issues because of their disease and not wanting to be seen or just they might not be heard by their doctors or they're really feeling hopeless. So it's really important that mental health is addressed with psoriatic disease because it truly can take a toll. 

LB: I can't thank you enough for all that you do for the psoriatic disease community. I mean you're helping in so many ways, whether it's One to One, you're on Sistas With Psoriasis speaking out, in front of our government leaders. Thank you so much. What would you say has been the most rewarding way to help you have all this variety? If you had to pick one, which one really brings that little tear to your eye of happiness?

Ayesha: Honestly, the One to One LB. I don't know how you feel, but I get so much joy just connecting and learning so much from others. It really is not just about me helping, but those who I mentor also help me as well. So I get so much joy from that because it's a direct human connection and it extends beyond the time that you have with the individual, not always like some might not, but sometimes it does. And it's like now I have this other person across the country that is just like me, that if I need them too, I could, I could just reach out to them and they know that I'm here or they know they're not alone. And I know that I'm not alone.

LB: Exactly, yeah.

Ayesha: So yeah, it's kind of like the fiber of our world, the connection of our world. So it warms my heart to be a part of it. I absolutely love the One to One mentor program. 

LB: Yeah, you don't want it to be a big world, but it's nice when it doesn't feel as small as you think it is to know you have that support.

Ayesha: Yeah, absolutely that makes it different.

LB: Well Ayesha, it's been such a pleasure talking with you today, hearing your story, hearing all the amazing things that you do. Any final words of wisdom for those listening just about living with psoriatic disease and any advice you wanna give as we wrap up today?

Ayesha: Sure. I would just encourage everyone to believe and trust and know that you're not alone. We're all here together. You're not alone. There's someone here, whether it could be me here for you, but just know that you're not alone. That's my advice.

LB: Thank you, Ayesha for being such an inspiration to others with psoriasis and psoriatic arthritis. You are a true gift to the community. Thank you for all that you do. We are grateful for how you provide support to others and for volunteering to support the National Psoriasis Foundation.

Audrey: Hello. Audrey Riggs here. Volunteer Services Manager here at the National Psoriasis Foundation, April 21st through the 27th is National Volunteer Appreciation Week. During this week, the National Psoriasis Foundation will honor our many outstanding volunteers such as Ayesha and LB, along with so many others who generously share their time and talents. Our volunteers mentor, raise awareness and funds, advocate for policy change, serve on advisory committees and boards, and participate in podcast recordings such as today's episode. All serving the mission. On behalf of the NPF we're grateful to all who support our mission. If you'd like to join us and become a volunteer, please visit psoriasis.org/volunteer. And finally, thank you to our sponsor Bristol Myers Squibb, who provided support on behalf of this Psound Bytes™ episode.