Autoimmune condition advocate Jenni Weaver explains what it’s like to live with both psoriasis and another chronic condition.

She also shares her trial and error of finding the right treatment for both conditions, and how to advocate for yourself when you don’t feel like you’re being heard by your healthcare team.

This interview has been edited for brevity, length, and clarity.

In 2012, I was officially diagnosed with RA, but I had been having symptoms on and off for a couple of years. It started in my knee, so it was just one location, which made it hard to diagnose.

By the time I saw a rheumatologist, it was widespread. This first rheumatologist I saw gave me a bunch of pamphlets and said, “It’s one of these, go figure it out.” There could have been a better bedside manner.

After about a year, I got tired of that rheumatologist and finally found help. I was having a lot of allergic reactions when I was seeing the first doctor, and I was taking a lot of the basic drugs. I had a seizure on the first medication and the second one gave me hives. These were both traditional DMARDs [disease-modifying antirheumatic drugs].

I did OK on methotrexate, but it didn’t help enough. The second rheumatologist I saw tried something else, but it didn’t work well enough. Then we tried another medication, and it worked better. I went into medical remission and it was great. But then my white blood count plummeted, and it never came back up. At that point I started going through all of the biologic drugs.

I arrived at the TNF [tumor necrosis factor] inhibitor class of biologics. It turned out I’m allergic to them, but we didn’t know it at the time. I started taking one, felt like I was in remission again, but then I started getting these weird sores. The urgent care I went to thought I had a skin infection.

At the next appointment for my infusion, my rheumatologist checked out my skin and said she thought she knew what it was but wanted to bring in other doctors to check me out. It turned out I had medically induced psoriasis.

Some people on TNF inhibitors develop it. At the time, my doctor thought maybe it might not be caused by the entire class of drugs, but for me, it was. So, since 2017, I have had medically induced psoriasis, specifically pustular palmoplantar psoriasis.

Autoimmune conditions like friends! There were a lot of medications I couldn’t try [for psoriasis] because they were in the same classification as TNF inhibitors. I know tons of people who are on things that work, but they don’t work for me.

I went on a “drug holiday” from my RA medications to focus on my psoriasis. Unfortunately, the dermatologists in my area were not great. Everything they tried to have me use — creams, sprays, etc. — none of it worked. Sometimes it made my psoriasis even worse. It was in my ears, scalp, face, arms, everywhere. It was near my bra strap, which is still a sensitive area.

This kind of psoriasis is described as a fire from the inside out — you develop boils, they pop, and then peel away, and you do actually get some relief after. I tried an injection medication that didn’t work for me, but now I’m on something that actually helps both of my conditions.

“Don’t just assume you have to keep seeing a doctor just because you’ve seen them once or twice, or even more.”

— Jennifer Weaver

People told me you have to go to Spokane — that’s the nearest big city — for a good doctor. I had to drive 2 hours to go there, but just after my first appointment, I knew I shouldn’t have gone back.

That appointment was with the first rheumatologist who simply handed me the pamphlets and sent me on my way. He also started me on steroids and said, “It looks like you’ve lost a lot of weight because of this, so it’s a good thing we’re starting you on the steroids.”

Every experience with him should have been the last. He never fully answered my questions. I was always rushed. I definitely look back and wish I would have done it differently. Knowing what I know now, I wouldn’t put up with it. I don’t want anyone else to go through that.

Now I live closer to bigger cities, like Portland and Vancouver, but I still see my old rheumatologist because I trust her.

Don’t just assume you have to keep seeing a doctor just because you’ve seen them once or twice, or even more. We don’t owe them anything.

Now that things are pretty steady and in control, I only have to see my rheumatologist a few times a year. I’ve moved, so it takes me 4 hours to drive there, but I do virtual visits in the winter, and then I see her in person in the summer. She offers me a lot of flexibility.

I do need to let my doctor see me at least once a year to really feel and see my skin, but telehealth is helpful and can address a lot of things.

It’s fascinating. Some people took my pain with psoriasis more seriously than my pain with RA, I think, because they could see it.

A lot of times I would try to hide my skin, but my hands would give me away. People would grab my hands when they saw them and say something like, “Ohmigod, are you OK? How’s your skin doing? How are you?” But then they wouldn’t ask about my RA. In a bad flare, my joints will get red and swollen, and you can actually see it.

People didn’t look at my pus or blood on my skin and think, “Oh, that can’t be that bad!” But now that I am where I am with the condition, I would probably get more of a typical reaction because it looks a lot more like “regular” psoriasis.

With RA, sometimes it’s our own family members — they think we worry too much. My husband is so protective of me, but he doesn’t want me to “stop living.” I can’t be around sick people. I’m that annoying person who’s constantly asking people to wash their hands.

It’s just as hard for our families as it is for us. They want to be protective. But they also want us to live.

Jennifer Weaver

Jennifer Weaver hails from the Vancouver, WA, area. Her experience with rheumatoid arthritis and pustular palmoplantar psoriasis fuels her determination to support and uplift others facing similar challenges. She has turned her journey into a source of strength and empathy for those feeling overwhelmed and isolated. Jennifer runs a support group for folks with autoimmune conditions with a friend who lives with juvenile idiopathic arthritis. You can check out her blog, My Spoonie Sisters, and podcast of the same name.