6 People Explain What It’s Like Living With Psoriatic Arthritis

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Simple tasks become difficult during flares, and I can lose my train of thought mid-sentence, which makes me feel really self-conscious—especially at work. I worry that people take this as me being rude and not concentrating, but really it’s just the psoriatic arthritis brain fog and fatigue kicking in.” —Jude D., 28

3. “I might wake up under a cloud of exhaustion, too tired to move.”

“Fatigue is a huge part of what we are up against. Tired doesn’t really explain it. Everything creates more fatigue, including stress, pain, and medication changes. And just because I feel great today and we make plans, tomorrow I might wake up feeling like I’m under a cloud of exhaustion, and I’m just too tired to move. There is no way to know when it is going to happen.

Most of us don’t complain about our pain daily. If we are bringing it up, it’s because it’s bad! I don’t always talk about my drug changes, but when a drug ‘fails,’ I will be unmedicated for months as I switch to a new one. During this time, I’m in more pain, and probably pretty emotional.” —Tanya G., 43

4. “Just because you don’t appear sick doesn’t mean that you are not sick.”

“My psoriasis is not visible to others, and the days I’m really struggling with my arthritis, I don’t leave my house. So when people see me, they think I’m fine. It’s been a roller coaster of good days and bad, but nobody sees the bad days when you can’t get out of bed. I really find that lack of understanding to be the hardest part of an invisible illness—just because you don’t appear sick doesn’t mean that you are not sick.

I used to be quite active, and it’s difficult to not be able to do what I used to do. Psoriatic arthritis strips you of your identity, but you eventually build yourself back up, learn to live with it, and accept that things will be different. For example, I love to travel, but I now travel very differently. I’m more conscious of burnout and fatigue, and I make sure I have lots of time to rest and don’t push myself to the limit. But I refuse to let psoriatic arthritis control my life or hold me back.” —Brenda S., 35

5. “Once you think you’ve given up everything you can think of, something else comes along.”

“When I was diagnosed, I remember feeling so sad. I went from running three or more miles a day to barely being able to walk for the first four hours of my day. I remember being so stiff and in so much pain at work because standing or sitting for too long hurt. I’m a nurse and for a while I was afraid I wasn’t going to be able to work anymore. Night shifts threw me into flares and I had to go way out of my comfort zone to ask for accommodations.

I think the grief roller coaster is the hardest part of living with psoriatic arthritis. You have to give up a lot, and once you think you’ve given up everything you can think of, something else comes along that you suddenly can’t do anymore. A lot of times, you haven’t finished grieving one thing and before you know it, another thing pops up to grieve. It takes a toll on your mental health.

Having psoriatic arthritis has been such a wild ride, and sometimes I resent the ride, but the community that I’ve been so privileged to meet through this on social media is something I am so incredibly grateful for.” —Jenny P., 27

6. “One of my biggest worries was that I would have to stop running.”

“I began running about three years ago, with a goal to run a 5k. I got hooked and that goal soon moved to a 10k, a half-marathon, and then finally a marathon. My running journey was going well, and I was improving quite quickly—until just over a year ago when I suddenly developed swelling in my ankles and wrists and became very fatigued.

One of my biggest worries when I was diagnosed with psoriatic arthritis was that I would have to stop running. But my rheumatologist told me to keep being as active as I could. Funnily enough, I can run with minimal pain in my joints, but peeling vegetables and scrubbing the shower can result in hours of dull aches in my wrists and hands. So even though my rheumatologist may not have meant that I should train for another marathon, this is exactly what I did! I became quite determined that psoriatic arthritis wouldn’t stop me from achieving this goal, and although I had to take a few weeks off from training now and then, I managed to complete many months of training and ran my marathon in September of last year.” —Tracy U., 44

Related:

https://www.self.com/story/psoriatic-arthritis-diagnosis-changed-life

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