I also started experiencing joint pain, which led to an additional diagnosis of psoriatic arthritis, a condition I had never heard of before. That added a lot of whole-body fatigue to the mix, leaving me feeling like I always needed to lie down. But after some trial and error, I’ve found some things that work for me. Here’s what I’ve learned along the way.
Finding the right medication may take some time.
I’ve had a rollercoaster of a ride finding a medication that works for me. Since being on my current biologic medication, I’ve been able to manage my psoriasis and just experience patches here and there. I was previously on another biologic medication that caused me to have sarcoidosis symptoms (inflamed lumps that appear on the organs) as well as Bell’s palsy, which temporarily causes paralysis on part of the face. I was also on prednisone (a steroid) at one point, which I stopped taking because I was gaining weight so quickly. I stopped it so abruptly, though, it led to 50% of my body becoming covered in psoriasis lesions, and I was in so much pain. I even tried phototherapy, which didn’t work fast enough for me.
But my current medication has worked beautifully for me for the last three years, though I still have some fears about experiencing side effects or other issues. It’s very expensive, and I initially wasn’t able to get it because of some issues with my insurance. But when I finally did get it, it started working within weeks, clearing up most of the purplish lesions that covered half my body. Now my psoriasis isn’t the biggest thing on my mind—and I don’t feel like I have to always wear long sleeves and cover myself up—which I’m grateful for.
Being judged by others is deeply upsetting.
There just isn’t enough information out there about psoriasis, and it shows. There are still so many people who don’t know what psoriasis even is, and I’ve even encountered doctors who don’t know what psoriatic arthritis is. When I was in my 20s, before I was diagnosed, I actually worked as a medical assistant, and I remember a woman came in with psoriasis and I definitely overreacted, which I feel bad about now. I’ve had doctors and health care staff look at me like I was diseased when I went for unrelated appointments, such as mammograms. They would act like they didn’t want to touch me, and I came out wanting to cry a couple of times.
This even continued after the lesions were clear. They left behind some discoloration, mostly on my stomach, backside, and whole torso. I could hide them pretty easily, but I always felt really uncomfortable at doctor appointments because I could see them reacting to it. I was still trying to maintain my health and take care of myself, but it made me not even want to go to doctor appointments. I felt like I was being judged for a condition that I have no control over.
Psoriasis can seriously impact your mental health.
At its worst, my diagnosis also impacted me mentally, even making me feel suicidal. I was really depressed during that time when my skin was at its worst and I was experiencing so much physical pain. I thought, “I don’t want to live like this.” My daughter, who is almost 31 now, was also recently diagnosed with psoriasis and is experiencing pain similar to mine with psoriatic arthritis. I feel guilty about that, almost as though I “gave” it to her. Thankfully, I’ve had my family as something to live for, with a supportive husband who has been here from the beginning.