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Podcast

Supporting Black Women with Psoriatic Arthritis: Ayesha’s Story

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Summary:

In this inspiring conversation, Ayesha shares her personal journey with psoriatic arthritis and explains why she developed better resources for black women with dermatologic and rheumatologic conditions. As the founder of SistasWithPsoriasis and The PsoriaSis Collective, Ayesha is a passionate advocate for Black women with psoriasis and psoriatic arthritis, creating spaces where women of color can feel supported. 

Cheryl and Ayesha also delve into the devastating impact fatigue can have on their lives and share tips for managing and preventing fatigue.    Above all, they urge listeners to validate their own feelings and aim for full acceptance, with the hope that brighter days are ahead.

Episode at a glance:

  • Ayesha’s Diagnosis Journey: Ayesha opens up about her personal experience living with psoriatic arthritis and reflects on the role of race and gender on her treatment. She, highlights the importance of advocating for yourself, especially when navigating a chronic illness without a medical background.
  • Advocacy for Black Women: As the founder of SistasWithPsoriasis and The PsoriaSis Collective, Ayesha has dedicated her platform to advocating for black women with psoriasis and psoriatic arthritis. She creates safe spaces for them to connect, support each other, and share their experiences.
  • The Role of Fatigue: Ayesha and Cheryl reflect on what fatigue feels like for them and how it impacts them on a daily basis. 
  • Self-Care Tools: Ayesha’s favorite self-care tool? Her yoga mat! She starts every day with a stretch, using it as a moment of peace and wellness.
  • Empowering Words for Newly Diagnosed: She shares heartfelt advice for newly diagnosed individuals, stressing the importance of validating your own feelings and asserting yourself in medical situations.
  • Words to Live By: Ayesha’s mantra, centers on putting your spiritual self first, believing that everything else will fall into place. She also encourages full acceptance of life’s challenges, reminding listeners that “the only way through is through.”

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Ayesha Patrick 

Ayesha is a Mom, Writer, Speaker, Patient & Psoriatic Disease Advocate.  She is passionate about sharing her experience as a black woman living with psoriatic disease. She is the Creator of The PsoriaSis Collective & Founder of Sistas with Psoriasis Facebook Support Group.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

Cheryl:  00:00

I’m so happy today to be joined by Ayesha Patrick. Ayesha, welcome to the Arthritis Life Podcast!

Ayesha:  00:07

Thank you so much, Cheryl. I’m so grateful and thankful and excited to be here. So, thank you once again for having me. 

Cheryl:  00:14

I’m so excited. Yeah, and we met each other in person in September 2024 at the Healthy Voices event, which was an amazing patient advocacy event in New Jersey. But just to give yourself a quick introduction, where do you live, and what is your relationship to arthritis? 

Ayesha:  00:34

So, I actually am Jersey born and bred. I live in New Jersey, so going to Healthy Voices was pretty easy for me. But as far as like my having psoriasis — psoriatic arthritis, rather — I was diagnosed in 2020, so it’s all fairly still very new for me, having gone through everything that I’ve experienced since my diagnosis.

Cheryl:  01:04

Yeah, that’s, I mean, that’s such a good point that it’s, it feels new to you. I mean, in many ways, it changes over time, right? So, you’re four years down the line, especially being diagnosed in 2020. I mean, that’s a difficult time to be diagnosed. And we always, you know, I always ask about people’s diagnosis story, sometimes known as diagnosis saga, you know, did you have psoriasis before, a psoriasis diagnosis before psoriatic arthritis, and how did you — what symptoms did you start having?

Ayesha:  01:39

Well, I’ve had psoriasis nearly my entire life. I’m well into my 40s, so that tells you how long. But it was very mild. Really, when the weather changed, I would have issues, or a lot of issues with my scalp, but pretty mild. And it really wasn’t until at the top of the pandemic that I experienced my worst flare in life. And I wouldn’t even call it a 360 it was a 180 because honestly, once I experienced that, like my life changed and hasn’t been the same since. And that’s when I also started experiencing the symptoms of psoriatic arthritis. I never really understood how they related, because I had just began to really understand more about psoriasis, and had no idea that I could develop psoriatic arthritis. 

So, many of the symptoms that I would have would be just stiffness in my joints. I would wake up, it would be very difficult to even walk down the stairs. I would have to hold the sides of the wall to walk down the stairs. I would have swelling in my hands, swelling in my feet. And one of the things that I didn’t even realize what the symptom was, I had pitting in my nails. And I noticed it. I was like, oh, this is pretty weird. I don’t I don’t know what’s going on with my nails. And like, they were discolored. So, those were the symptoms, but really the stiffness waking up in the morning, especially during times where it’s colder up here in New Jersey, it would just be very difficult. And I ended up having to, you know, go to dermatologist and there after the rheumatologist, and got full blood work done, all those things, and then it was determined based off of my symptoms and everything that I did, in fact, have psoriatic arthritis.

Cheryl:  03:44

So, yeah, you would previously, I’m assuming, being been seen by the dermatologist to manage the psoriasis. And then, that is kind of a unique feature of psoriatic arthritis versus, like, what I have, rheumatoid arthritis, where we just go directly from primary care to rheumatology, where you have to kind of be seen by both dermatology and rheumatology, but it sounds like the rheumatologist made the final definitive diagnosis. And did you — was it hard to be taken seriously at the doctors, or did they — we kind of have a lot of, like a running — some doctors are amazing, and some people are like, I feel like I’m the only person on this podcast who said that I got diagnosed really quickly. So, it’s, like, but we do — I do want to bring awareness to how difficult it can be.

Ayesha:  04:31

So, I’m not sure if we even have full time to address that, but I will do my best. So, in regard to my psoriasis, when I did have my major flare up, I had so many issues with my dermatologist at the time really related to my scalp psoriasis at that time. And she had prescribed some medication that I was told I had to wash my hair every single day. And I’m a Black woman. And if you know anything about Black culture, we do not watch wash our hair every single day. And at that time, my daughter was at the appointment with me, and it just seemed like the dermatologist was very dismissive and was not understanding or had a lack of cultural competence when it came to that. And she told me, “Well, you just have to wash your hair at least every three days, because it’s, you know, really, really bad.” So, I followed those instructions, and the majority of my hair fell out. 

And that began my journey of trying to find another dermatologist. And luckily enough, through just getting, you know, involved with different groups, I got heavily involved with different Facebook groups, I went there to try to get some advice on finding a dermatologist. And lucky enough, I was able to find a dermatologist that is amazing. And she is the one that referred me to a rheumatologist, and because I trusted her, I knew that whoever she would refer me to, I would feel comfortable with. So, by the time I got to the rheumatologist, I actually felt quite comfortable. I felt quite heard. I felt understood. 

So, but leading up to that, it was very difficult to explain, because unless you’re experiencing these different issues, you know, sometimes when you’re explaining, because you’re not a doctor, you might be like, well, they’re the doctor, they’re right, but this is your body. You know your body. You know ,I’ve lived in my body over 40 years. I know when things go awry. So, for me, by the time I did get to the rheumatologist, I’m happy to say that this, this woman is amazing and has heard me, and I’ve had no issues as far as expressing any concerns. But leading up to that, I definitely had some challenges, for sure.

Cheryl:  07:13

Yeah, I’m just, I’m so sorry to hear that you were treated that way. And it’s just, you know, in like — I was gonna say in the year 2024, but whatever the year was that you were told to wash your hair every day. It’s like, how, with all this access to information, it was — why am I still surprised when people, you know, are not culturally competent? I’m just, I’m sorry that that you went through that and that, I mean, it wasn’t just like, emotionally difficult to hear that, I’m imagining, but obviously physically painful, but for your hair to fall out and you to have, like, so much psoriasis on your scalp. I’m like, itching my scalp just thinking about this.

Ayesha:  07:52

Yeah. Thank you so much. I appreciate that. I think for me, too, it became more than just being, you know, the feeling of being misunderstood, but the fact that my child was with me, who is also a young, Black female who is looking up to me as her example. It, for me, that was the catalyst that I needed to do more to educate and help and advocate for others just like me, because there’s no reason that anyone should have to feel like they’re not heard just because of the color of their skin or the texture of their hair. And, you know, honestly, it helped to catapult me into my current advocacy. So, I needed that, honestly. I mean, it was unfortunate, but I needed that from her so that I could then do the work that I’m, you know, bested to do, which is how we landed here.

Cheryl:  09:07

Well, yeah, that’s — and you’re making my job easy, because that’s a perfect segue. So, yeah, how did you, you know, to put it probably simplistically, like, turn this really negative experience into now a positive, in the sense of you’re helping others maybe not experience what you had to or what you did.

Ayesha:  09:27

So, I was having a difficult time. After that whole interaction and everything like I told you, I went to Facebook trying to find another dermatologist, but in general, I was just trying to find other women of color, specifically, who have psoriasis, to give me tips. Like, what are you guys doing, you know, for your scalp? What are you doing for your skin? Like, I need, like, some tips, some tricks, something. Because, you know, nothing’s working. I’m having an issue with my current dermatologist. And at that time, I couldn’t get the appointment with my current dermatologist for a while, because this person is very well known and very high in demand. Because every person of color, the majority of us go there. I actually travel about 40, 45 minutes to get there. So, I wasn’t getting, like, any feedback. I wasn’t, like, connecting with anyone. And I’m like, wait a minute. There’s no way that there’s no other Black woman out there dealing with these issues. 

And literally, I was sitting at the park with my two of my really good friends. And literally, in my head, I was like, I’m going to make a group. And I was like, if there’s no group, I’m going to make a group, and maybe people will find me. And maybe we can, like, help support each other, because maybe there’s people that just are not comfortable with sharing, but want to be a part of something, want help just like me. And literally, that is how Sistas with Psoriasis was birthed. And I literally started like, as you know, a Facebook group, and I have an Instagram page, and it just built on from there, and now has flourished into The PsoriaSis Collective, but it started as Sistas with Psoriasis Support Group, literally trying to just get tips and tricks from others that look like me or just like a listening ear. Because, you know, with your friends and family as supportive as mine are, still it could be challenging to always go to the same people about like issues. So, you kind of, like, want to give them a break, and, you know, be able to go to others and having people who have experienced the same things that you have, you feel a connection. 

So, that’s how my advocacy and, you know, my support group started. And I got a — I would be remiss if I did not mention that I got involved with the National Psoriasis Foundation, and they were amazing. And the mentorship, the advocacy, all, everything that they provided me, the support resources, even sending me free resources in the mail, different things I can try. They have a Patient Navigator Center. That is what I relied on until I could get seen by my current dermatologist, and they gave me the tools that I needed in order to fully support the women who join my group.

Cheryl:  13:06

That’s so — I mean, I think, first of all, you are filling such an important need, you know, by providing this face — I was gonna say face-to-face, but providing opportunity, I think, for a lot of patients, just want to talk to someone else who gets what they’re going through and connect, whether that’s because, you know, we are both — theoretically — but two people are, you know, women of color. I also was just talking to James, who is with a young male, with, you know, Caucasian male. And he felt kind of like, there’s always women online talking about their stories. Where’s the men? Like, I just want to connect to someone else who kind of understands maybe the pressures I feel when dating and stuff like that. So, I know I’m just preaching to the choir here, but it takes a lot of gumption and time and energy when you’re already feeling, you know, the fatigue from a systemic autoimmune disease like psoriatic arthritis. 

So, I think I will put a shout out, you know, so I’ll give credit to you, and I’ll put a shout out in the notes or link to the National Psoriasis Foundation, because I think it’s like the perfect combination is we need the patient, the real patient experience, and that kind of personal connection, and then the professional organizations can fill in those gaps of maybe, like, providing these, like, kind of comprehensive, like, evidence-based resources. I know the Arthritis Foundation and Creaky Joints do that too, and there’s an Autoimmune Association. There’s a lot of great resources out there, but yeah, a lot of times we need the personal touch. I think it’s, like, win-win. Just have both, you know. 

But a lot of times people don’t even know about these associations, or you have a disease called psoriatic arthritis, and then you go to the Arthritis Foundation, not even realizing there’s a separate association. So, part of it’s just helping people connect those dots. Yeah, and I would love to know, actually, just, I know you probably you don’t want to share any people’s individuals details or anything. But what were some of the responses you got from the people who joined the initial, you know, Sistas with Psoriasis group, or The PsoriaSis Collective, like, what — I’m sure it’s just amazing.

Ayesha:  15:11

It’s almost the same response every time we have someone new join. It’s, “Wow, thank you for creating this space where I can just, like, connect with someone,” because there’s a lot of women of color living out there that, first of all, may not even know that they have psoriasis, you know, and then when they do, either get a formal diagnosis, they’re like, well, what is that? It can be a scary thing if you don’t understand. And then, they might not have people in their you know, in their lives, to help support them. 

So, each and every time someone new joins, it’s exciting because we are extending within our family of knowing like you have someone not only that looks like you, but has experienced similar things as you, and we’re able to like, you know, we can’t give medical advice, obviously, but we’re able to support you and share our unique experiences, and it can help you along your journey. So, each time and from the inception to now, is the same, just they are like, immense gratitude from each person, like, “Thank you so much. I’m so grateful that this space exists. I’m so happy that I can share how I feel.” That’s literally how it is every time we have someone new join.

Cheryl:  16:33

Wow, that’s so powerful. And I think you said, yes, it’s not medical advice. And I think that what we experience is so much more than medical, right. Like, I mean, it’s not knowing how to explain it to friends and family, or thinking about dating or navigating it on the job. It’s just like life. Sometimes I say it’s not medical advice, it’s life advice. You know, being occupational therapist, that makes it’s a little confusing, because we are kind of all about, like, life skills and functioning in daily life and — but anyway, point being, you know, I think we can’t, like, I don’t know how people navigate these conditions without some sort of connection to others who’ve been there. I really don’t. 

I think that there are people out there who just end up feeling just really, really isolated. Or maybe they, maybe there’s some people who don’t get connected socially to others because they get on a medicine that works and they just, their disease is controlled. Is your group — sorry, I feel like I just rambled — we’re both talking earlier, before we recorded about fatigue and brain fog that I have ever since the Healthy Voices event where I totally overdid it, knowing that I would pay the price later, just paying the price a little longer than I thought I would.

Ayesha:  17:49

I’m also paying the price. We chatted about that a little bit before, yeah, but you know, it’s just we’ve been pushing through.

Cheryl:  17:57

We’re gonna, yeah, it’s all good. I have self-compassion, compassion for myself.

Ayesha:  18:02

And grace. Grace. 

Cheryl:  18:04

Yes, yes. That’s another thing that’s so great. It reminds me about having these, you know, groups like I have my just Rheum to THRIVE, you know, groups and people, it’s so much easier — this is another little theme I’ve seen — is people say it’s so much easier to be like, to say a kind remark or encouraging word to someone else than yourself. You know, when you realize when you’re telling someone else, “It’s going to be okay,” or, you know, “You’re doing the best you can. No one’s perfect,” if they did something like, let’s say that, you know, “Oh, my gosh, I made a stupid mistake. I forgot my medicine, and I’m really feeling bad,” or, you know, “I didn’t do the routine that I know helps me, and now I feel guilty.” It’s like, oh, the friends jump in, right, and say, “We’ve been there, too,” but we sometimes lack that own compassion for ourselves. You’re nodding. So, I’m on the right track. [Laughs] 

Ayesha:  18:53

Oh, yes, definitely. I think, for me, I’m always thinking about others before myself. And like I will run myself to the ground, so, and really, a lot of people didn’t even understand or know that I was experiencing what I was experiencing between the psoriatic arthritis and the psoriasis. I’ll never forget, I went out to lunch with one of my good girlfriends, and I had my, like, my arms out, and I had it up, and she saw my hyperpigmentation, and she was like, “What’s — wait, like, what’s going on?” I was like, “Oh, I have psoriasis and, like, it, it cleared up, but, like, I have, like, the hyperpigmentation.” And she’s like, I’ve never, like, really noticed before. And I’m like, well, now I’m over 40, so I’m like, as I get older, I care less. But you know, I never complain. I never, you know, I do complain with myself, or like, my sister, I share different complaints, but as far as anyone else, or I’m always like trying putting others before me, so I definitely resonate with everything that you said,

Cheryl:  20:10

Yeah, and I know you’re a mom, too, and that really can make it more complicated, right. Because there is this internal drive to put your child’s needs, you know, before yours. And that can be really hard.

Ayesha:  20:26

It’s very difficult. When I had my worst flare and all of that happened with me going to the doctor, and my daughter was with me where after that, when I had lost majority of my hair. I’ll never forget this, because this is also something that has shaped how I moved forward. I was standing in the bathroom, and I was like, you know, taking the scales out. And my daughter was standing in the doorway, and she was looking up at me, and she said to me, “Is that going to happen to me?”

Cheryl:  21:23

Oh, wow. 

Ayesha:  21:28

And I get very emotional about it in that moment because of who I am. I said to her, “Well, if it does happen to you, you see I’m okay, I’m fine. And, you know, you’ll be fine.” And she got ready, she went to school, and then I came home, and I was like bawling. And for me, like, that, again, was a moment where I’m like, I have to, not only motivate and push myself, but I have these children who are looking to me for the answers, because we’re not raising children, we’re raising adults. So, we have to provide that blueprint for them, for when they’re going to face adversity and challenges and change. And that moment, like, I always mention that moment because it really pushed me, because I’m saying to myself, years from now, when I’m no longer here, maybe my great, great, great, great grandchildren will know of like their grandmother, who persevered despite whatever challenge. 

And years later, maybe like a year ago, actually, my daughter, we were talking about everything, and I said, “Do you remember when you said that to me and like, do you remember how you felt like?” And she said, “Yeah, of course. I remember.” And I said, “Well, what, you know, what made you like, ask me that?” And she was just like, “Really, I just remember you being in a lot of pain,” and, you know, I was like, wow. Like, just thinking about that, too, and just wanting to protect — because I have two children — wanting to protect them both, but also, like, also teach them that whatever cards you’re dealt with, you push forward and move forward and move through with life. So, it’s something I cherish, even like every moment I cherish, even the moment that I have with the dermatologist that didn’t hear me, it’s all a lesson. It’s all with purpose. 

And even, like, it’s so crazy. Like, one of my first YouTube videos I did was like in 2020 and I talked about how I had did a vision board for 2020 and I was turning 40 in 2020. And like, oh, my God, I’ll say, whoever you believe in. But I said, God, please, you know, show me vision. Show me like what it is that you have for my life. And literally my life like flipped upside down, but it changed in a way that I would never go back. I would never go back because I’ve learned so much about myself. I learned more about my strength. And I learned how I can be the blueprint for my children. 

Cheryl:  24:59

Wow.

Ayesha:  24:59

I’m grateful for that. 

Cheryl:  25:01

That’s extremely powerful. I mean, I really resonate with what you’re saying about you want — the inclination, at least for me, when my child, or a child I’m like working with or hanging out with because of my kids friends, when they express fear about something, my instinct is always to want to reassure them and tell them it’s going to be okay, and you can protect yourself, if you just, you know, you just do the right things, nothing bad will ever happen to you. And we know that that’s not true, right? Bad things happen to good people. Good things happen to — it doesn’t matter how good or bad you are, you know, it’s just, it’s stuff happens, and giving your child an age appropriate understanding that it’s not like everything’s going to be okay, but that you can cope with whatever happens. That’s just like that — what do they call it? Like, resilience or grit? Yeah, and it really is powerful, and it’s definitely not, I don’t know. I don’t think I would have come up with this worldview if I hadn’t experienced so many health challenges over the years.

It’s so hard to answer those questions. You know, honestly, like, I think my son hasn’t really understood that there is, like a genetic, I don’t think we talked about it, like a inherited predisposition, that he will have a little bit more likelihood of getting juvenile idiopathic arthritis because I have rheumatoid arthritis, but it’s definitely something that at some point he’s gonna probably ask about. And he asks about, you know, yeah, what to do to make pain better, it’s like, they want to fix it for you, you know, they love you and they want to fix it. They’re like, “Okay, can I make it — can I make it better if I kiss it? Did I make it better?” You know. Yeah, it’s hard. And when they’re little, you can just be like, if they’re like, three, I’d be like, yes, you kiss it and it’s better because I’m like, I don’t know how else to explain things to a three-year-old. But as they get older, it gets more the gray areas. So, yeah, I mean, this is what, this is what we mean when we say that it affects your whole life, not just your joints.

Ayesha:  27:12

Absolutely. Everything, everything is affected.

Cheryl:  27:17

Yeah, I want to give another, a little time to focus on fatigue, not because that it’s fun to talk about, but like coming up next month, Chronic Eileen, Eileen Davidson, who was also at the Healthy Voices, she and I are giving a talk at the American College of Rheumatology about it’s literally called, ‘It’s not just joint pain. How can providers address the systemic issues’, better address systemic issues of inflammatory arthritis? So, inflammatory arthritis is the autoimmune types, like psoriatic arthritis, spondyloarthritis, and ankylosing spondylitis and rheumatoid, and kind of depending on what resource you’re looking at, sometimes things like lupus and Sjögren’s that can have joint pain also are kind of lumped together. But point being, the biggest thing that we’re focusing on that talk is, or biggest things we’re focusing on are fatigue and mental health, you know, effects, and there’s the systemic symptoms, like eye dryness, lung and heart issues. What would you like to share with the audience or with the world, whoever’s listening about you know how fatigue has — what does fatigue feel like to you, and how has it impacted your quality of life?

Ayesha:  28:39

Wow. So, fatigue is very — the only way that I’ve ever described which, for half of our population, is probably going to be difficult for them to understand. But the tiredness that I had during my pregnancies x10 is like the tiredness that I have with fatigue. And to make it easier for others who might not understand what that feels like, it’s debilitating. It’s to the point where it actually bothers me a lot. Like, I feel like I could deal with physical pain, but fatigue where I literally have, I can’t move, I can’t push myself. I have no drive, because I literally am depleted. It’s very difficult for me because I’m a person that I try to do it all, and it feels, it feels horrible. There’s times where I literally sometimes I really can’t get up, like I have to say, no, I can’t do things because I am exhausted. And it’s regardless of how I self-talk or what have you. It doesn’t matter. I can’t move through. 

And I’ve had to, like, become okay with that sometimes. And I had to become okay with asking my kids for more help with certain things around the house, and asking others, where whether it’s my sisters or friends, to help support me differently, because then I’m worse on myself when I can’t show up the way that I would like to. And then that really is what messes with my mental health. So, for me, like, it’s all connected, but the tiredness, the fatigue is, it’s almost painful. Because it’s like, it’s like seeing, okay, if you’re in a desert, right, and you see a mirage of like, water, but you can’t get to it. Like, you can’t get to it, but you see it there, and you’re thirsty, and you can’t get it. That’s like, how the fatigue is. Like, I want to do things, I see the things that I want in front of me, but I cannot. I can’t get there. And it’s like, this can be devastating. It honestly, it really can be. 

Cheryl:  31:20

I feel like that is like the best metaphor I’ve heard for it, because it really gets to that point of, it’s not just that what it feels like physically. I often say it feels like someone, I will say out loud, someone turned the volume up on gravity, like everything that I have to do is harder, like a physically, like, it’s like this moving through mud, and also kind of feels like when you have the flu. For me, like I’ve had, like, actual tested and diagnosed influenza a couple of times despite getting my flu shot. So, I can’t even imagine how much worse it would be if I didn’t get the flu shot. But, you know, just that exhaustion, profound exhaustion. But it also is that you, your analogy of the mirage touches on this kind of grief of the things that you — the disconnect between what you want to do and what your body is able to do is so frustrating. And that you it’s not like you can just, you know, I mean, you do have to end up adapting and changing expectations. But it doesn’t stop the fact that you want to be able to do more, and you wish you could do more. And it’s like a desperation type, you know, feeling. 

And, I mean, I just, yeah, I appreciate your vivid, you know, description of it. And, you know, to be honest, I’ve, been kicking around this idea of exercise helping my fatigue, and that had been working for a while, and then just this last couple weeks, I’m like, either — I’m still pushing myself to exercise, because that was my little theory that was, in addition to getting your disease under control, which usually involves medications, you’ll obviously talk to your doctor about that, then think lifestyle, things like avoiding your fatigue triggers can be really helpful. Like, for me, sunlight and heat are huge triggers, and over exertion, or under exertion are triggers. So, if I’m not active, I will get more fatigue. So, I’ve been trying doing strength training, and that’s been really helping overall for the last year. 

But it’s funny, the last couple weeks, I’m like, oh, I don’t know if that theory is as simplistic. And that’s part of the process of having rheumatoid arthritis, is that you have a theory and it works for a while, and then you’re going to have to adjust the theory, adjust the plan. Because I’m like, man, this is persisting despite my attempts at strength training. And it’s always hard to be like, well, I’m also exerting energy in order. So, I’m like, do I scale back on that exercise? Anyway, that was leading up to asking you, has there been anything that’s helped your fatigue historically? Or —?

Ayesha:  33:53

Yeah. So, I actually, at one point, because of my psoriatic arthritis, it was encouraged that I exercise and all that good stuff, which I have done, and at one point I was teaching group fitness classes. But as things progressed, I actually was a bit hard on my joints, so my rheumatologist recommended not doing as high intensity of like training that I was doing, so I’ve had to adjust. So, I’m actually now getting into strength training, but primarily I would do, like, a lot of stuff that was very difficult on my knees specifically. 

So, I’ve had to adjust, but it’s been a challenge, because since I’ve scaled back, and we were talking a little bit about this, but since I scaled back and I haven’t been teaching my classes, I’ve put on some weight, which then makes it harder to go into, like, this whole mode of working out and everything. So, I am, like, microtasking myself, like, even if it’s just like one day each week, picking up the weeds, doing something, because I don’t want to get down on myself if I — I don’t want to be an all or nothing. I want to be happy and okay with being able to just do it once a week, twice a week, whenever, but that’s going to help me. So, definitely, doing workouts has helped with the fatigue, because you do get that, you know, the endorphin boost, so that that has been helpful. Walking, you know, things like that, being active. 

Cheryl:  35:45

Yeah, yeah. And it’s finding that sweet spot, like you said, and and tweaking it over time, and knowing that, yeah, one day maybe you can do more strength training. The next day, you might have to scale back. But I love the idea of microtasking. One of the physical therapists I met at the American College of Rheumatology conference, she said that she calls them exercise snacks. Like, yeah, instead of thinking of like, one giant trip to the gym, little snacks throughout the day, which I think, from the fatigue perspective, really works like, but it all is so complex, right? Like, I could — it’s not just about the amount of minutes or the amount of weight. It’s also like, for example, you know, I could do 20-minutes at like a mild to moderate intensity on the exercise bike, and that won’t fatigue me, but 10-minutes at a high intensity will fatigue me, you know. 

So, it’s learning like your body is almost like you’re doing like a little experiments on your body, you know, right? And learning to be flexible, and — what’s the word — like, not okay, but tolerate when things don’t go according to your hypothesis, right. Because I get really frustrated. I just, I’m like, a recovering control freak, I would say, you know, I just want to figure out the solution. It’s like, something my husband I have in common, because he’s an engineer, and it’s like, we’re very like, okay, like, we’re very like, okay, figure out the solution. Just do it. Like, it’s just like, chronic illness does not play by that rules, those rules, yeah, you have to be like, okay. So, you know, we adapt, we cope, you know, try our best. And if it doesn’t work, just we deal with it. And I was going to just ask, looking at the time, oh, my gosh, this has gone by so fast. Is there anything else you wanted to share before we get to the rapid-fire questions, which are, really, I should call them, just like the conclusion questions, because they’re not that fast.

Ayesha:  37:41

I think I just want to share, especially with other people of color in general, that it’s important that we learn more about whatever autoimmune condition you might be experiencing. With psoriasis in general, it looks differently on our skin and so, you know, sometimes we’re either misdiagnosed or undiagnosed. And what’s important about that is a lot of people who have psoriasis will develop psoriatic arthritis, and the damage that is caused by psoriatic arthritis is irreversible. So, if we, you know, are not educated, or know about different resources or what have you, there’s a window of time there that you know we’re missing out on what we need in order to address these issues before they become major problems for our lives. Especially, there’s so many advancements, different medications, different things that can be done to help people out there. 

So, I just think it’s important for the community of color, in general, for us to, you know, make, have ourselves become educated about these things. This is why it’s important for me the work that I do, so that I can be not only just a voice, but a resource for the community so that, you know, everyone is aware of these different opportunities and about different things that they can do to address these situations. So, I think that’s really what I would love to share. Like just, you know, get educated. Ask different questions if you notice something, you know, you go to your doctor, bring a pen and pad, you know, write down your questions. Like, use your phone for voice notes if you’re not certain about different things, but definitely educate yourself and ask questions and learn more about whatever you know condition you’re experiencing. 

Cheryl:  39:50

That’s so important. And I just was pulling up, if you saw me looking down, just because I was pulling up this research study that just to give numbers to what you’re talking about. So, in 2022 the Journal of Rheumatology, which is like a major peer reviewed publication, had this article where they found it was called ‘Representation of Skin of Color in Rheumatology: Educational Resources’. Of the thousands of images reviewed, this is from the results, the final scoring revealed 86% of images — sorry, these are images that doctors use to learn about these conditions. So, this is medical school. This is the reference guides that they use to practice medicine. 86% were light skin, 9% were dark skin, and 5% were indeterminate, which is, I think between light and dark. I’m not really sure how they define that, because I’m just looking at the abstract. 

But, that’s so, that is just even worse than I would have thought. Like in the year 2022, how are you supposed to diagnose something in people, you know, Black and Brown skin, if you’ve only ever seen a picture of it on, you know, like, in my example, I am extremely pale, and in the textbooks, it usually says for rheumatoid arthritis, pink, tender, swollen joints. For my skin, they are pink. For your skin, they probably don’t look pink. Like, what? So, anyway, I’m ranting, but I’m just echoing the importance of what you’re saying. Like, so foundational and it’s taken a lot of patient advocacy to even bring this up unfortunately. And luckily, pressure within — there doctors who are aware of this issue and rheumatologists, so they did do a call, and this is where I need to find an updated resource. They did, the rheumatology association I know in the US had like a call for images of rheumatic conditions in skin of color. Did you, were you aware of that? Or —?

Ayesha:  41:56

I believe I’ve heard of that, because I’m actually a patient research partner for a clinical trial. So, I believe I have heard of that, but I know, personally like that, there are different things that are happening to make that change. There’s a lot of work to be done, which is why it’s important that, you know, advocates are out there to share the message and amplify our efforts so that we can get the support that we need in order to help those in our community, so. 

Cheryl:  42:30

Yeah, and I’ll try to see if they’re still accepting, because this is just a vague memory. Again, with brain fog, that they were actually asking patients to submit pictures, you know, of it was called like, I know I just remember the phrase was ‘skin of color’. That was this phrase that they use of different, you know, rheumatic diseases. So, that is so important to get that at the very foundation when the providers who have this power to diagnose are and monitor your disease progression. They have to, they have to have access to those images. Otherwise, they can’t do their job, you know. 

And the patients are going to, like you said, they have this critical period to control the disease and avoid permanent joint damage, so the delays and diagnoses that are unnecessary, hopefully, can be fixed with — slightly, don’t get too ambitious. I’m just saying because other things that also make people, you know, get gaslit and not believed at their appointments, sadly. But it’s something very concrete and specific that people can do. So, thank you for bringing awareness to that. And, you know, on the same kind of, I know what you were just talking about being your best advocate, doing your research is so important. I mean, my next question is usually, what is, what are your best words of wisdom for newly diagnosed patients? That’s like, where my heart is. I just, yeah, I know yours, too.

Ayesha:  44:02

My best words of wisdom are that how you feel is valid because oftentimes, again, because you might not have degrees or what have you, you might question because you rely on what you’re being told, but you live with you a hundred percent of the time, and you have to be your best advocate. So, how you feel is valid. And always, you know, respectfully assert yourself if you have to question anything. So, that’s what’s the advice I would give to newly diagnosed patients, or wisdom. 

Cheryl:  44:41

I love that. I don’t think I’ve that’s been brought up in those same words. And I think it’s very healing for me, even just to hear that, hear those, that phrase, how you feel is valid. Like, I could say it to myself, but hearing someone — and I’m not newly diagnosed, it’s been 20 years, but still it’s so, you can’t say that enough. You cannot say that enough. Totally. Do you have a favorite arthritis gadget or tool in your toolbox?

Ayesha:  45:10

I don’t have a specific gadget, but I would say that my yoga mat, because I stretch every morning is like my favorite thing ever, and it has the sun on it. So, it kind of like starts my day. That’s like, you know, I get up and I start my daily stretch, and so definitely, my yoga mat. Love it. 

Cheryl:  45:33

I love that. That’s perfect. Do you have a favorite book or movie or show that you’ve been watching recently or reading recently?

Ayesha:  45:42

I have a guilty pleasure show.

Cheryl:  45:48

That’s my favorite topic.

Ayesha:  45:50

And it’s the ‘Secret Lives of Mormon Wives’. [Laughs]

Cheryl:  45:57

I have heard so many good things about this show,

Ayesha:  45:59

If you, if you don’t have time to be like, embroiled in anything, don’t do it unless you have, like, a weekend, like a binge worthy weekend. And it’s so funny because the keynote from Healthy Voices, he’s from Utah. And I was telling him, I was like, oh, I know you get this all the time, but do you know about The Secret Lives? And he was like, “Oh, my God, it’s so good.” Oh, I don’t feel bad now. But it’s like, oh my — you can’t stop watching it. So, that is my guilty pleasure right now. I don’t really watch a lot of TV. I like to read. But, you know, when I do have those moments where I’m exhausted and I just want to lay on a couch, I’m watching ‘The Secret Lives of Mormon Wives’ right now. 

Cheryl:  46:51

There is something about reality TV. My husband and I are watching ‘The Traders’ right now, the traders show, which is like a reality TV competition, and it’s it just, we get sucked in, you know. I’ve actually really tried to psychoanalyze. It’s like, why do I end up caring about these people so much that people I’ve never met in real life? You realize it’s just that humans care about each other. And in our it’s deep in our DNA, and we don’t have any psychological like defenses for the fact that we’re connecting parasocially with people who they’re never going to meet in real life, you know? But it’s like, okay, that does make sense. Like, I care about other people, and maybe that’s maybe my justification for why. Also, but you don’t need to. How you feel is valid. What you watch on TV as well, as long as you’re not hurting anyone. Oh, do you have a favorite mantra or inspirational saying?

Ayesha:  47:48

So, pretty much on everything I have Matthew 6:33, and it’s something that is a scripture that my mom would always instill in us, and would — my mom has passed away. It’s been several years now, but it’s something that I keep present in my life. And pretty much the Scripture says, “If you put God first in all things, everything else will be added unto you.” So, whether you believe in God, higher power, whomever, just putting your spiritual self first, and then anything that you desire will come from that, so that I hold dear to that in every aspect of my life.

Cheryl:  48:35

Thank you so much. Thank you so much for sharing that. I just, I love just hearing what works for people, you know what I mean? And I know that resonates with a lot of people. The last one is, what does it mean to you to live a good life and thrive with psoriatic arthritis?

Ayesha:  48:53

To live a good life and thrive is full acceptance. It’s full acceptance that who you are is okay, It’s full acceptance of just knowing that there’s no mistakes in life, and despite how we feel, everything — for me, anyway — is a lesson. Some lessons are going to be harder than others, because if you’re facing different challenges, the only way through is through. So, moving forward, being your authentic self, and just accepting whatever is laid before you, you’ll be able to get past into the other side much more quickly than if you just stay stagnant in despair. And when I tell you the future is so bright on the other side, I promise it’s just a matter of getting there.

Cheryl:  50:00

That’s so sweet. I just gave you a heart in the Zoom window. I love it. I love it, though. I also like the only way through is through. It’s like, I think sometimes the only way out is through, but it’s actually like the only way through is through, like, you just have to go through it, like there’s no other way. There’s no way around it. Yeah. 

Ayesha:  50:20

Literally. 

Cheryl:  50:21

Literally, I am going to put links to your all of your different social media, you know, handles in the show notes, but why don’t we just share it with the audience. Where can people find you online?

Ayesha:  50:35

Sure, so on Instagram and Tiktok, you can find me at @SistasWithPsoriasis, all one word. On Facebook, The PsoriaSis Collective. And if you want to join the private group, it is Black Women with Psoriasis, or if you just want to go to my website, and then on the right hand side, you will be able to see all those good things, is thepsoriasiscollective.com. You’ll be able to find all of my socials there.

Cheryl:  51:06

I love it. And it’s PsoriaSis with a capital S, so like ‘Sis’. I love that. I love it. Yeah, it’s so, it’s a clever title, which I just love it. There’s, yeah, I love it. Thank you so much. This has been really just, you know, heartfelt and very, very moving. I know people listening are going to be feeling like very, you know, inspired and supported, especially other Black women or people of color. So, I just really appreciate it, and I hope everyone follows you and supports all of your projects, and we’ll see you online. Bye-bye for now.

Ayesha:  51:46

Bye, thank you so much.

Cheryl:  51:47

Thank you. Bye.

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