Patient Perspectives: Learning to adapt and finding understanding with psoriatic arthritis

Three people living with psoriatic arthritis share what it means to adapt and find understanding.

Transcript

00:00

The worst thing someone can do is make you feel guilty for putting your body first. [MUSIC PLAYING]

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ELAINE HUSNI: Hi, everyone. I'm Dr. Elaine Husni. I'm vice chair of the Department of Rheumatic and Immunologic Diseases at the Cleveland Clinic,

00:14

and I am joined here today by Aimee, Elizabeth, and Jim, who are living with psoriatic arthritis.

00:20

So welcome, everyone. How has it been to adapt to psoriatic arthritis? Let's say if I plan something, because I

00:27

hate breaking promises to my kids, I will take it easy a few days prior. Like, I took them to Six Flags three times in the last 30

00:36

days, because I bought passes. Phew. So I was-- you know, in between that, I was doing nothing. You learn your own body, your own limits, physically,

00:46

emotionally, and with stress. It's really good to be real mindful of that so that you can kind of prepare, especially

00:53

if you have something coming up, so you don't miss it. I try to go out, and I go for walks as often as possible.

01:01

Granted, there are some days that I'll go out, and maybe I might only walk a half a mile.

01:07

And my knee will start bothering me, and I'll have to go home. Aimee? I think, for me, it's more about, like,

01:14

modifying my expectations. Unless you go through it, it-- you cannot understand. And there was a good amount of time

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that I felt, like, very not understood, and it kind of just was this-- it just-- it just caused a lot of stress, which,

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therefore, causes flares. So I just figured the only opinion that matters in this situation is really mine.

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I find that I encourage people to bring their friend or their spouse or their loved one to the visit,

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you know, so that they understand, you know, how that visit is and, you know, what I'm telling them and about the treatment.

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And so sometimes that's been really helpful, if they're willing to, you know, to do that. So they're just not hearing it from you,

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but they're, you know, in the moment, you know, in the office. Everybody wants to help you, I'm sure, but I don't think there's a good way

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to tell people how to do that. You don't understand a person with psoriatic arthritis unless you have it yourself.

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So you have to just listen to the person. Be open. I'm a person that gets really guilty. Like, I get-- I feel such guilt about things,

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so the best thing that someone in my life can do is not make me feel guilty for not being able to show up. It's crazy.

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One of the things that is difficult when it comes to this is not only is it different every day, but it's different where it is.

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And it's one of those invisible diseases. Sometimes I'm like, man, if I was in a wheelchair, people would be like, ah, OK, versus,

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look, she's lifting weights. She's fine. Why does she have a handicap sign? That is really hard, because you feel like you're explaining different things every time,

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you know. Yes. You know, this is the same thing I have. Yes. Yeah. As may know, there are so many new treatments

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for psoriatic arthritis. We did not expect that we were going to have, you know, more-- more treatments than I can count on my fingers now.

03:02

What do you think you look forward to, hearing this? They are narrowing it down closer and closer to-- to where

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this disease is caused from. I know that they're going to figure it out, if not in my lifetime, in my kids' lifetime.

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I'm positive of that. I really do have that hope. I smiled instantly, because it's nice knowing that if something doesn't work,

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you have so many options, because back in the day, there was like three. And when I see the commercials and knowing that there's so many out there, it's a hope,

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and hope is everything. I have tried several different medications, even though I had this short time diagnosis.

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But it is good to know that there are so many available out there, because, you know, as Jim said,

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hope. I used to be very focused on the clinical trials and the effect of the drugs, but what we are really learning now

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are-- is from people like you. We're looking at, is it helping your fatigue? Are you moving better?

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You know, is your mood, you know, improving? And it's just wonderful for me to see all these added, you know, what we call outcome measures that

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are included. So it's really important to have, you know, people like you that are articulate to really voice some of these,

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because this is where we learn. This is where we can work together as partners.