Important Things Doctors Should Know about Psoriatic Arthritis
People with psoriatic arthritis (PsA) depend on their doctors, especially their rheumatologists, for proper treatment. But sometimes, there can be a big disconnect between doctors and patients.
What should doctors know about PsA?
Having been treated for PsA for over ten years, I've had some great doctors and some not-so-great ones. And there are quite a few things I wish all healthcare providers knew about PsA.
When asked, "What is the most important thing that doctors or healthcare professionals should know about PsA?" members of this community and I brought up these important points:
This disease affects the entire body, not just skin and joints
Yes, there's pain. But it's also waking up feeling as if you haven't slept in days, feeling so foggy that it's hard to concentrate, and struggling to get through the day. It's dealing with other effects from the pain and swelling, like hearing loss or vertigo. And there are so many other things that have had a more significant impact on my life than most imagine.
I couldn't agree more with what others said. For me, psoriatic arthritis is so much more than itchy skin and painful joints.
"Fully understanding that extreme fatigue is a HUGE symptom and makes life unbearable. And it really needs to be taken care of instead of being ignored and untreated.""It attacks in many different ways, not just the skin.""How it affects you mentally."
Listen carefully and believe us
Whenever I see a new doctor, I'm afraid they will brush me off because I don't have a cookie-cutter case of psoriatic arthritis. My anxiety is even worse when I'm having a good day and my joints look great. I worry they won't look much past what x-rays and bloodwork say. I want my doctors to listen to what I'm saying, take all my symptoms into consideration, and have empathy.
There were quite a few people who talked about wanting their doctors to look at all their symptoms and take them into consideration. I personally only got my PsA diagnosis thanks to a very attention-oriented doctor.
"Just because I'm not showing a particular symptom while I am sitting here in front of you today doesn't mean I don't get it at all (ie sausage fingers).""Every case does not present the same, nor should they be treated the same. Step from behind the screen and listen carefully.""If we say something about our symptoms believe us and follow through with investigations not ignore it. Listen and validate it as it is very real the pains and struggles we go through."
Just because I can function doesn't mean I'm not suffering
Many people mentioned that doctors don't seem to understand how painful this condition is, and I completely agree. My quality of life matters. But sometimes, it seems like my doctors don't feel that way because it looks like I'm coping okay. In reality, I'm coping because I don't have any other choice and am living in survival mode.
I'm always afraid of being judged because I am working full-time; if I can work, then it can't be that bad. But I've been had so many periods when my life was an endless cycle of dragging myself to work until my body crashes. It's not healthy, but I feel like the doctors rarely understand or find it to be a problem.
"It is a lot worse than they were taught. We are not exaggerating. We are honest with you, be honest with us.""To be more compassionate about this condition. Just because we look fine on the outside doesn't mean we are on the inside. Most of the docs rush you in and out and don't even want to listen to you.""Just because I've learned to function with this level of pain doesn't mean that I'm not in a lot of pain!""That I'm very good at acting like I feel fine when I am always in pain and exhausted. Trying just to function on a daily basis has forced us to wear a "mask of normalcy" for the rest of the world."
What else should healthcare providers know?
There are lots of other things I'd like to tell my doctors. I wish they'd realize that I'm struggling financially to afford treatment or that I'd appreciate it if they shared more resources regarding over-the-counter and alternative treatments.
What do you wish healthcare providers knew about arthritis?
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?