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Patient Perspectives: Adapting to Psoriatic Arthritis

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

 

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Transcript

00:00
The worst thing someone can do is make you feel guilty for putting your body first. [MUSIC PLAYING]
00:06
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
01:21
that I felt, like, very not understood, and it kind of just was this-- it just-- it just caused a lot of stress, which,
01:29
therefore, causes flares. So I just figured the only opinion that matters in this situation is really mine.
01:37
I find that I encourage people to bring their friend or their spouse or their loved one to the visit,
01:44
you know, so that they understand, you know, how that visit is and, you know, what I'm telling them and about the treatment.
01:50
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,
01:56
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
02:04
to tell people how to do that. You don't understand a person with psoriatic arthritis unless you have it yourself.
02:11
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,
02:19
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.
02:25
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.
02:33
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,
02:41
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,
02:48
you know. Yes. You know, this is the same thing I have. Yes. Yeah. As may know, there are so many new treatments
02:54
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
03:10
this disease is caused from. I know that they're going to figure it out, if not in my lifetime, in my kids' lifetime.
03:20
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,
03:28
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,
03:35
and hope is everything. I have tried several different medications, even though I had this short time diagnosis.
03:43
But it is good to know that there are so many available out there, because, you know, as Jim said,
03:50
hope. I used to be very focused on the clinical trials and the effect of the drugs, but what we are really learning now
03:57
are-- is from people like you. We're looking at, is it helping your fatigue? Are you moving better?
04:03
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
04:11
are included. So it's really important to have, you know, people like you that are articulate to really voice some of these,
04:17
because this is where we learn. This is where we can work together as partners.

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