Positives Instead of Negatives: Living with Psoriatic Disease

Shiva: My name is Shiva Mozaffarian and joining me today to share their stories and give tips on how they manage stress are two amazing volunteer mentors with the One to One Peer Support Program, Alan Simmons and Renee Joyce. Alan came to the One to One Program through another volunteer mentor, Matt Kiselica, who invited him to a Team NPF Walk. Alan found the event comforting because he saw people who weren’t afraid of each other having fun, who knew what he was going through. He knew he had found a place of acceptance. Renee is a second-year medical student who was diagnosed with psoriasis at age 10 with guttate and plaque psoriasis. At age 16 her psoriasis went from overwhelming to mild with the help of an amazing dermatologist which inspired her to pursue a career in medicine. Both are now volunteers with the One to One Mentor Program and understand how sharing their experiences and being there for others can be helpful. Let’s hear more from Alan and Renee as we explore what it means to live with psoriasis and psoriatic arthritis while also helping others move past their fears and stress to enjoy life.

Welcome, Renee and Alan! To start our discussion today, let’s first hear about when you were first diagnosed with psoriatic disease. Alan, you were diagnosed as a child with psoriasis and later in life with psoriatic arthritis. What was that like?

Alan: Well, I was a little younger than Renee. I was seven when I was diagnosed and my psoriasis was triggered by chicken pox. Growing up in a small town in Texas, it was tough. Without going into a great deal of detail, kids can be cruel. I was bullied and made fun of pretty much every day which for someone that's been newly diagnosed, that's not really something that they wanna hear. But whenever I'm talking to people about my condition, that's one of the things that I let them know is “Hey, it's going to be tough, but you don't have to do this alone”. I wasn't diagnosed with psoriatic arthritis until I was 35 and mine got to the point where I was almost walking with a cane. I was married at the time. My wife was really embarrassed. She wasn't real supportive and she really just didn't want to be seen with me in public. So things were not rainbows and butterflies every day for me growing up.

Shiva: Thank you so much for sharing your story with us Alan. It’s so inspiring to hear. And Renee, what was it like when you were first diagnosed with psoriasis at age 10?

Renee: Yeah, mine was a little bit different. So at age 10, I didn't really notice it at first. I was more focused on doing 10 year old things. I was kind of running around. It didn't impair me too much when I was first diagnosed. Mine was triggered by strep throat and it kind of had a creeping on over the years when after I was diagnosed with it, so first I didn't really notice it that much.

Shiva: Yeah, here at the National Psoriasis Foundation we often hear that strep throat is a common trigger for many with psoriasis. So Renee, what would you say has been the most difficult aspect of living with psoriasis over the years?

Renee: So as I kind of alluded to earlier, at 10 years old, didn't really notice it too much. But once I got to the age of 12 it had gotten head to toe, completely covered and the social and emotional aspects of the disease were really challenging for me throughout my preteen and teenage years. Kind of like what Alan was saying when he was growing up. There is a lot of bullying. I don't think the people who said things necessarily meant to be mean or have malice all the time. They just didn't know what was going on and they noticed someone who looked different. Some comments might be from confusion, like people asking me if I knew how to shower properly or if I had an infection that they might get. But at that point, emotionally I didn't really know how to cope with that. At that age it’s like a young girl, the last thing you want to do is stand out and look different. So my reaction was to kind of withdraw socially and emotionally. I tried to cover up my skin and everything as much as possible wearing, like, baggy clothes and I honestly started to give up on myself in some ways. I even stopped using my medications at one point, so I just felt like the whole thing was hopeless.

Shiva: Wow, that's quite the story. It’s wild how both of you have almost similar experiences.

Rene: Ummm.

Shiva: So Alan, while you've mentioned some of your difficulties already, do you have anything you'd like to add about the most difficult aspects of living with psoriasis or psoriatic arthritis through the years. Was stress a trigger for your psoriasis?

Alan: Stress was very much a trigger for me and as a kid, I stayed pretty stressed out because I really didn't have any friends. The only friends that I could quote unquote say that I had was really my family, my cousins, and my brother and sister. All of those different people. Those were my friends and having a rather large but very close-knit family was kind of my saving grace. But stress was very much a trigger and I stayed stressed out all the time. Just like Renee, I became a master at hiding it. I wore my hair long. I wore baggy clothes like she did. Well, I didn't see a picture of Renee whenever she was a kid. But I'm gonna assume that we were both wearing the same baggy clothes. And I just got really good at hiding it. And I just tried to keep myself under the radar of all the bullies. Once you go through that aspect of trying to stay under the radar all day, every day nonstop, you stay pretty stressed out.

Shiva: And Alan, we know life can definitely be challenging and stressful when living with psoriasis and psoriatic arthritis. So how do you manage your stress? What do you do to help relieve your stress level and are there any resources that you can recommend?

Alan: Actually, how I manage my stress depends on the type of day that I have and where I'm at. One of the things I love to do, I love to sing. That has been one of my heart joys from a young age is being able to sing, but I also love working with my hands. I love to write. I love to be out in nature and there's so many different things that I enjoy doing. So when people ask me, well, what do you do to manage stress? How can I learn how to do that? And it's like you just have to find your bliss. So you have to find something that makes you happy. And regardless of who is going to tease you or whatever, go ahead and start doing that. But I've also had to learn how to use the tools that I have available to me. One of them is the company that I work for right now has an employee assistance program. So I can get at no cost to me professional help from psychiatrists and it's also through medication. Because of the arthritis, I don't get as much exercise, but I can get out and go for a walk. So I do all of that. And then if I ever get stuck and I need some help the Psoriasis Foundation has the Patient Navigation Center. They can get me connected with educational material and they can also get me connected to professionals if I needed to. So there's so many different resources and you just have to find what works for you.

Shiva: That’s a great point. So Renee, how about you? How do you manage your stress associated with living with psoriatic disease? And are there any specific resources you can recommend to others, like the Employee Assistance Program Alan mentioned?

Renee: So Alan, I'm so happy you brought up kind of like seeking therapy, psychiatry, that kind of thing. A lot of schools, including the medical life school I go to and a lot of colleges, they have therapy services and psychiatry services that you can contact and usually you get a number of sessions for really little cost or no cost at all. And that is a great way to sort of work through the stress you're having. I think having a space where you can take those concerns that are kind of weighing on you all day is really helpful. Because I'm like, OK, my skin is, like, really getting to me this week, but I know that I have a time on, let's say, Thursday morning, I have an appointment, I have an hour where I can talk about how to deal with this with a professional, and I find that very, very helpful. And then what Alan was saying about getting outside and doing things you love, I totally, totally agree with that. Since I have the medical school thing and I'm kind of a science nerd, I like to think about things that I know will change some chemistry in my body to make me feel more relaxed. So I know that getting outside, studies have shown that exposure to nature can reduce blood pressure, heart rate, muscle tension, and the production of stress hormones. Moving your body even just like something little as a walk down the hallway. If you're at work or wherever, studies have shown that can reduce anxiety, depression, negative mood and help improve self-esteem and cognitive function. And also alleviates the symptoms from social withdrawal. So that’s the kind of stuff that we were both talking about being the social withdrawal piece. So moving your body, getting outside, and the last thing that I will say is spending time with a pet is actually really great way to just immediately kind of decrease stress response in your brain. It lowers the stress hormone cortisol. If you just sit there and pet a dog or a cat for a little while. So I always have my cat on my lap, like, pretty much all the time and that's why.

Alan: Are we going to share pet pictures? Cause I would totally.

Renee: Oh I hope so!

Alan: I would totally share the picture of my calico.

Renee: Ohh I have a big tuxedo cat. He's a big boy. Too funny.

Shiva: So Renee, you began volunteering with NPF in 2021. How did you first become interested in volunteering for the National Psoriasis Foundation? Why did you choose the NPF and what activities have you participated in?

Renee: So in the beginning of medical school, I knew I wanted to do some kind of outreach and interact with patients kind of on a more personal level and maybe outside of the typical medical setting. And I was thinking about what would younger me look up to and feel proud of at some point. And I was thinking I struggled so much with the emotional aspects of psoriasis growing up, but I felt so alone. But I feel like I've learned so much from it, so I was like oh like I wanna do some psoriasis volunteering and there the NPF was. I just thought it was the perfect fit for what I was looking for. And in terms of things that I've got involved with, so the One to One Program that both Alan and I are mentors in. That’s something I do so mentoring people who are usually newly diagnosed with psoriasis. And one of the things I did recently, which was so much fun, I went to Harvard Medical School as a patient presenter for to represent psoriasis patients. I was invited there by Dr. Susan Bergen through the NPF. Basically, I had an interview with one of the dermatologists there and the whole first year medical school classes there for their skin exam course. And that felt so important because I got to really drive home like it's not only for looking for those typical psoriasis rash patterns, it’s important to note how your patients doing emotionally and like socially with these problems to kind of do, do that holistic approach to psoriasis care. So that was just absolutely incredible. I could go on and on. I love the NPF.

Shiva: Renee I’m so glad you brought that up. It’s such an amazing opportunity to help educate medical students and help them learn more about psoriatic disease. So thank you for providing such an invaluable perspective. Alan, you began volunteering with NPF in 2015. Why did you choose the NPF? What did you do to start volunteering with us? And what other types of activities have you participated in throughout the years?

Alan: Well, when I first started volunteering, it was right after I participated in one of the walks and I had never been around a large group of people with psoriasis and psoriatic arthritis before in my life. It was just so amazingly comforting to actually be around a group of people where everybody was laughing and shaking hands and giving everybody hugs and I wanted to get more involved in that. So, one of the first things I did was I joined the One to One Program and I kind of smile whenever Renee’s talking because I was like, OK, she's saying everything that I was saying to myself whenever I first started, you know. And I'm quite a bit older than her. So I've been around a little longer and been on this journey a little longer, but it was really awesome to hear her say all of that cuz I'm just like, “Yep, that was my reason too. Yep. I did that. Yep. That was my reason.” So I have been part of the One to One Program for a long time. I've been the MC for several of the More Than Skin Deep. I have been a board panelist on many of the National Conferences. Also, I was in the very first group that started the Research Ambassador program for National Psoriasis Foundation. And in that program, as a patient, it allows you to actually go into research facilities where these doctors may or may not have any direct contact with a patient. They're working towards a goal that someone has given them and they're trying to reach that goal. But if they had the opportunity to talk to a patient that lives it every day then they have a resource available to them. Maybe you don't change their direction of research, but maybe you just kind of narrow down some of the avenues that they have been exploring and get them better focused on accomplishing their goal because they have that direct contact with a patient.

Shiva: So Alan, you mentioned the One to One Mentor Program, why did you choose to be a mentor?

Alan: I chose to become a mentor because it weighs heavy on my heart because as a child, I didn't have anyone to talk to. It was very, very difficult, and I know that my parents struggled because they could not wrap their brain around what I was going through and I really, I get teary out here for a minute, but I didn't have anybody to talk to. I didn't have anybody that I could lean on and say, hey, I had a really bad day and they know exactly what I was going through. And it wasn't until I found Matt that I had that person, and he was my mentor. Whenever I first joined the program and it seemed like whenever I was at my worst, I would just randomly get an e-mail from him. And he was like, “Hey, Alan, how you doing? You're on my mind today. I'm just checking in with you” and it just allowed me that opportunity to actually reach out to someone else that had been down that same journey that I've been on.

Shiva: Well Alan I think I can speak on behalf of the entire NPF when I say we're so glad you became a mentor. You offer such amazing and unique support! So Renee, how does the One to One program work? How do you get matched and communicate with mentees?

Renee: So each mentor has a profile that includes kind of an intro or bio about who we are and our experience with psoriasis. You know what kind of psoriasis we have. Do you have psoriatic arthritis, that kind of thing, just the basic profile. And mentees can look at these and message someone who they feel they'd be comfortable messaging with and they feel like they be a good fit. Maybe they have similar disease characteristics. And then from there, depending on people's preferences, you can message through the Chronus app, which is the platform that we use. You can e-mail like Alan said, if some people talk on the phone and so it's a six-month partnership between the mentee and the mentor. And we provide support, we can discuss goals, and then over that six-month time frame trying to reach those goals.

Shiva: And Renee, what would you say are the most common issues your mentees look to you for support and suggestions for?

Renee: Definitely emotional support would be #1, which I totally understand. As Alan was saying in his story and kind of what I experienced too. Even though so many people have psoriasis for some reason it feels so impossible to meet someone in your day-to-day life and talk about it with them. I just like have rarely had that experience so I think they wanna have that emotional support with someone and it's so great that with technology they can ping me a message, I can ping them one back when they're having a hard day. And then I guess the runners up for that spot would probably be tips on keeping up with treatments and then maybe dietary changes. The things that affect your day-to-day lives, like how we live our lives.

Shiva: Yeah, those are valid concerns and definitely sound like they would be top concerns. I’m glad you mentioned them. Alan, do you have anything you'd like to add to Renee's comments? What are some of the common issues your mentees look to you for help with? And is emotional support number one as well?

Alan: Well, I seem to match for whatever reason mostly with males, and I think it's just because if you are a male that's been newly diagnosed, it's comfortable to talk to another male about it, where maybe you might not mention things that are going to be a problem or are a problem to a female. It’s difficult to have a romantic relationship whenever you are a psoriasis patient because there are struggles. And if you don't have a supportive person in that relationship, then it can get very discouraging. You can feel rejected and alone. So with the few females that I have connected with through the program, many of them are just wanting to have somebody to talk to and many times the females that I have connected with they’re in the similar age bracket as me. In some cases, I have had people in the program that were somewhat local like within an hour’s driving distance of me. I think they just wanted to speak to someone that was local and potentially meet that person, like at a walk or one of the foundation events.

Shiva: So Alan we know 75% of participants in the One to One program ask for emotional support, which is something Renee validated as well. 72% request coping techniques and 61% request stress management ideas. Are there any specific suggestions beyond what you've already mentioned that you give to your mentees who are dealing with the stress of living with psoriatic disease?

Alan: Basically I'll circle back around to what I said earlier about finding your bliss. I just start asking them “OK, so what makes you happy? Is it working with your hands? Is it writing? Is it being out in nature or spending time with family?” I just basically walk through some steps with them of what brings you joy and then if that is something that brings you joy, let that be your stress relief. And then also if you have an issue or you are having a bad day, don't wait for me to reach out to you and do a check-in. If you're having a bad day, with my mentees I go ahead and share my personal e-mail if they want it, I give them my cell phone if they want it. And I basically just say I am here. If you're having a bad day, call me. Let's talk about it. Let's get it out in the open. Let's vocalize what we’re going through and that way we can deal with it.

Shiva: And Renee, I wanted to see if you have any additional suggestions or comments to add?

Renee: Yeah, I think Alan and I are totally on the same page yet again. Just getting it out of yourself, being able to put what you're feeling into words and talking with someone. It makes it almost seem more tangible the problem you're having and something that you can work with once you put pen to paper, you know, type out whatever your thoughts are. So I always encourage my mentees whatever time, whatever's happening feel free to just send me even like “Oh, I don't feel good cuz, XYZ. Can we talk?” Anything like that, just having that open communication is really, really helpful I think.

Shiva: So Alan, you mentioned in the past that your grandfather has had some interesting and inspiring words for you. Are you willing to share those comments with our audience and us today?

Alan: I would. My grandfather was a preacher in Texas for over 40 years. One of the two things that he excelled at was basically just scripture itself, but also, he was one of the most amazing counselors I have ever met in my entire life. That was one of the gifts that I'm very proud to have in my life was whenever he was around he was on a source for me to talk to. But when he got sick and had to be in a nursing home and on dialysis, that was a time in my life where the company I had been working for went bankrupt and I got to spend a lot of time with my grandmother and a lot of time with him. At one of my low points I was pretty much covered from head to toe and while I was sitting in his room one day, he just kind of turned over to me and he said “why do you let your skin bother you so much?” And I was like “well, Grandpa, look at me. I'm covered from head to toe in sores. There's no one that's ever gonna love me, and it's just every day I just get beat down emotionally and socially because no one wants to be around me, and I just feel like I’m gonna be alone.” And he said “well, why do you let your skin bother you?” And I'm just like “well, because I feel like I'm alone”. And he said “If you only see your skin, what are you gonna expect everyone else to see? Don't focus on your skin. Focus on you. If you show yourself, people are gonna like what they see, and they're not gonna focus on your skin as much.” And that was like a beam of sunlight coming through a stormy day. It was one of the things that significantly changed my life and kind of turned me around a little bit and had me focus on the positives instead of the negatives.

Shiva: Alan, that's such an inspiring story. I’m so thankful that you were able to share that with us. Your grandfather seemed like such a wise man. So Renee, I want to turn to you. When dealing with a lot of stress and anxiety, how important is it to focus on the things that you can control and change versus those that you can't?

Renee: That is so, so, so, so, so important. I'm really glad it's coming up. Kind of what I alluded to earlier when I was in that really hard place socially, like withdrawn, covering myself up, not really showing myself, wearing baggy clothes. I think what kind of brought me down that spiral, one large part of it, I was coming to understand at that age, what chronic meant and what it meant that psoriasis wasn't going to go away and that I couldn't make it go away. And that just, it felt devastating to me and it took me a couple years to kind of realize “OK, no, I can't snap my fingers and make my psoriasis go away. No one can. But I do have a say when it comes to my health. When it comes to deciding to do my treatments that day. When it comes to doing something nice for myself, like taking a bath or wearing a robe that feels nice. Like what can I do to make my body and my mind feel good in this moment? And that's when I started to feel like “OK, no, I do have control. I can make tomorrow a better day. I can make the days after it a better day. No matter if I have psoriasis and no matter if that won’t go away.”

Shiva: I love that perspective, thank you. And Renee, do you have any other methods or examples of activities our listeners could do to help relieve their stress and anxiety?

Renee: So one that I really like is called diaphragmatic breathing. It elicits something that's called the relaxation response. It's something that our brains can trigger, and it kind of changes you from the fight or flight mode where you're probably more so hyperventilating a little bit, to your oxygen levels in the blood up. It kind of resets that into more of like a resting rate. One thing I really like about this is that you can do it anywhere. I'll do it during exams sometimes even, sitting wherever you can do it. So the first step is sitting in a comfortable chair with both feet on the floor. Place one hand at the top of your chest and the other on your belly with your little finger about one inch above your belly button. Breathe slowly through your nose, using only your diaphragm. Try not to use your chest muscles at all. And it's like how do I know if I'm doing that? So they're doing it correctly your belly should swell out as you breathe in. And fall back as you breathe out. Only your lower hand, the one on your belly, should move. Once you're breathing with only your diaphragm, you start counting your breaths. So each time you breathe in count and then when you breathe out. So like breathing in one, breathing out say out. Breathing in two, breathing out, say out. So you do that up to 10, and you can do different numbers sometimes like if I'm in an exam, I don't necessarily have a lot of time to go all way to 10, so maybe I'll do 5. When we get to the top number, you do the same thing but backwards and you get back down to one. You breathe at your own pace. Try not to breathe faster or slower than normal. Concentrate on using your diaphragm, and when you're done counting breaths kind of let your hands, rest in your lap or at your side for a minute while you breathe normally. And then you could kind of come back to what you're doing and it’s just a great way, I think to ground yourself. It's a great method of mindfulness that I think is a lot easier for me than meditation, because when I think meditation like I have ADHD, that's not gonna happen. But breathing is something I can do. We can all do that. Shiva: And Alan, how about you? Any additional suggestions or comments regarding how to relieve stress and anxiety?

Alan: I'm sitting here with a great big smile on my face as Renee is talking about diaphragmatic breathing because in college whenever I was, my major was music education. I actually specialized in singing and you are supposed to sing from your diaphragm. So I from a very early age was taught that and didn't know how helpful it was and didn't know it really had a name. My teachers, just like you have to start breathing from your diaphragm so that you have breath support to sing. But one of the other things that I find really helpful early in life I got a massage and at that point I fell in love with it, and I made myself the promise or the life goal that one day when I have time and money I'm gonna learn how to do this. So while I was in massage school, I had the opportunity to share with some of my fellow students that were going to be massage therapists out and in the world exactly what psoriasis is, because the book that we had told us kind of what it was in a five-sentence paragraph but that was about it. So I took it a lot deeper. There is so much power in touch that a lot of people just are not aware of. And as psoriasis patients, we are sometimes rejected from being able to get that physical connection with someone. So whenever I'm having a really bad day and I feel like I'm stressed out, I will call one of my old classmates. And that's like, hey, we need to have a massage swap date where I'll give you a massage and you give me one and just lay there and just let someone have that connection with you. Work through the physical aspects of stress because there are not just emotional, but there's also the physical aspects of that stress. So get that worked out. Let someone use that power of touch and work through some of the stress that you have.

Shiva: You know I’m so thankful that you said that. Now we should all go out and get a massage! Alan and Renee thank you so much for being here today with us to share your story and tell us how you help support others in need, especially during stressful times, such as when someone is newly diagnosed with psoriasis or psoriatic arthritis. Do you have any final comments you'd like to share with our listeners today?

Renee: Well, I think, Alan and I can both agree that the One to One program is a great way to connect with people when you might be struggling or newly diagnosed. We're really excited and happy to talk with people. We're here for you if you need us.

Alan: And I guess my final comment would be for people that are listening to this, if you've got a family member that has been diagnosed or you are someone that's been newly diagnosed, I just want you to know that you're not alone. Renee and I and everybody else in the One to One program, we are here for you. And if you can't find someone that you connect with, at the very least find a professional. Find someone that you can talk to because talking is a great way to support your own mental health. And it's a really important base for your treatment.

Renee: I couldn't agree more.

Shiva: Alan and Renee, what can I say. I’m so so so thankful that you were here with us today. I find your stories so inspiring and I’m just so thankful that the listeners get to hear your words today. You’re both so amazing. Thank you for sharing such words of wisdom and for all you do to be the wonderful mentors that you are. I think I can speak on behalf of me and the entire NPF when we say we’re so grateful for how you support others and for volunteering to help support the National Psoriasis Foundation. You truly are there when people need help the most.

During April 16 to 22, the National Psoriasis Foundation is honoring our outstanding volunteers such as Alan and Renee through National Volunteer Appreciation Week. We honor and thank the many volunteers who give their time and talents to mentor, raise awareness and funds, advocate for policy change, sit on advisory committees, or are Board Members serving to drive accomplishment of our mission. We’re grateful to all who support NPF’s mission. If you would like to volunteer and join us visit psoriasis.org/volunteer. And finally thank you to our sponsors who provided support on behalf of this Psound Bytes™ episode through unrestricted educational grants from Bristol Myers Squibb, Janssen, and UCB.

Positives Instead of Negatives: Living with Psoriatic Disease

Psound Bytes™ Transcript: Episode 191

Release date: April 18, 2023

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