One of the things this psoriatic arthritis journey has done to me is make me look back on EVERYTHING and think, OH….that makes sense now.
I was reading a chat board about PsA and someone posted their story. He was super athletic, but injured all the time. And he listed the injuries he had over the years and I was like, um….he’s describing my life.
I sat there, and started rewinding the last 15 years of my life and feeling like everything was making sense. I had psoriasis as a teen, mild, and never thought much of it. When I lost the weight in my 20s and started doing lots of athletic things, I started getting injured. A lot.
Achilles tendinitis. Plantar fasciitis. Biceps bursitis. Bursitis in my ankle. Runner’s Knee. IT band injuries. SI pain. Hip pain. Bulging disc in my back. Elbow tendinitis.
I would go to the doctor and they’d tell me to rest and refer me to PT. I did PT constantly for over 10 years for one injury or another. One thing was common: the gaslighting.
In 2011 I wrote this: “And another thing–if I have one more doctor DISMISS me and my injury as a “Oh you’re 31 and a runner? That’s why” I am going to officially lose it. That is NOT okay. That is NOT a diagnosis. Don’t dismiss, practice medicine and help me.”
31. 31 years old and I was being dismissed. My pain wasn’t a big deal. I just needed PT. When I had other symptoms, my issues were dismissed as depression or anxiety. Nope. They were real. And I SEE THAT NOW.
I bring this up because it is SO common, especially for women, to be gaslit by medical professionals. We are dismissed so often, women of color even more so, and often times SERIOUS things are missed. How many times have we read stories of women whose pain was dismissed and it turned out to be cancer? It is crucial for us to advocate for ourselves and PUSH BACK. Say, no, it’s not depression. I know my body and I would like some tests run to find out what is going on. (I mean, is it NORMAL for a 31 year old to get an MRI done on their knees and show significant arthritis?)
Anyways, as I look back at the last 15 years, I see all the signs. I see how my body was breaking down and progressively getting worse. That’s the thing with PsA–it’s progressive. The trick is to stop the progression as soon as you can. I wish I’d had a diagnosis sooner. How many cortisone shots did I get in my knees and back? A dozen. How much money did I spend on chiro/acupuncture/naturopath/massage? A lot.
After I had Logan I was exhausted ALL THE TIME, even after he got older and we were all sleeping through the night. Every time I talked to my (old) doctor, she dismissed it as motherhood. I’d get blood work done and stuff was always wonky but “within the normal range”. But being so exhausted all the time is not normal. Now I know. It was PsA. The constant inflammation in your entire body causes crippling fatigue. My white blood cell count was always super high. Every time. When I’d ask the doctor they’d dismiss it and say “well you’re probably fighting something off.” Yeah. It was an autoimmune disorder.
“Early, aggressive treatment of PsA helps to minimize the effect of the disease on your quality of life. Managing psoriatic arthritis can seem like treating two diseases. Since many people with PsA have psoriasis, they may see a primary care doctor, a dermatologist and a rheumatologist. Some treatments work on both diseases. Others work mainly or only on skin problems or arthritis.” (source)
My point with this post is to keep fighting. Don’t slink out of the doctor’s office feeling defeated. It’s ok to be “That Patient.” Ask the questions. Ask for a referral. Ask for a second opinion. Ask for blood work. Whenever I have an appointment I have a list of questions. I don’t care if it takes up their time. When I met with my rheumatologist to talk about the treatment options, I had already done a ton of reading on the different medications for PsA and had a list of the pros/cons/efficacy of each med and asked questions about them when we talked about my options. Be prepared. Do reading and talk to other people.
But, don’t fall down a rabbit hole and get obsessed. It’s a fine line. Be informed, but not obsessed.
There are a lot of people out there with autoimmune disorders who probably don’t even know that’s what they have. I didn’t. For a long time. And now with post-covid/long-covid causing a lot of issues with people I think the rate of autoimmune disorders will go up. I hope this post helps.