Ask the Advocate: Living with Psoriasis and Psoriatic Arthritis

I’ve got two chronic conditions, and I’m always going to have them. Treatments will help, but I’m still going to have them. They’re chronic and just part of my life, which is probably the biggest challenge.

There are a lot of physical limitations, which is very difficult. It’s hard when you’re not able to do the simple things that you want to be doing, and coming to terms with that takes time.

I developed psoriatic arthritis symptoms when I was around 32 years old and got diagnosed when I was about 39. I was having trouble getting a laundry basket up and down the steps. We eventually had to move to a one-story house because it was too difficult.

And when I got the diagnosis, I felt like I was in this vortex going downward, like watching water go down a drain. I still remember that very vividly. It was like, “Oh my god, now what am I going to do with my life?” I had two young kids. I was going back to grad school. What would I do now?

The rheumatologist I was seeing said, “You need to get a handicap placard.” I was having trouble walking, my knee was very bad, and I had to have it replaced. And when you’re around people who are going to the gym, working out, and running 3 miles a day, it’s hard to be so physically limited.

It’s really hard when you’re in your 30s or 40s, knowing that this is something that’s always going to be there.

Eventually, I had to come to terms with that and realize that I had a new normal.

I get a lot of good information from the Arthritis Foundation. Unfortunately, I didn’t know about them when I was first diagnosed. It would have been great if I’d been able to get involved back then.

Finding a good rheumatologist is really important. I talk with my rheumatologist if something starts bothering me and if I wonder whether it’s psoriatic arthritis or something else, I can ask him. You have to have a doctor that you can actually talk to, who will listen and answer.

And when my doctor says, “You have this,” I go online and research as much as I can about what it is and what the treatments are.

It gives you a chance to see that it’s not only you — that lots of other people have these conditions.

I wish I’d had that in the beginning.

Most people don’t even know what psoriasis or psoriatic arthritis is. People don’t understand, and it’s hard when you mention that you have these conditions, and they respond, “What is that? Oh, you’re too young for arthritis!”

So, it’s really helpful when you can connect with other people who are going through the same thing. It’s comforting to get that kind of support. The emotional validation is very important.

It’s also helpful to hear other people’s strategies about what they’ve done that helps them.

At our last meeting, I did a presentation on managing pain. I shared a lot of strategies, things that I’ve learned in my professional life and also personally. It’s a good chance to learn more about your condition as well.

Be an advocate for yourself.

First of all, you need to have a good rheumatologist. And if your insurance plan isn’t giving you that, fight for it. It’s not enough to have a primary care physician.

You need a rheumatologist who’s really good clinically and also willing to listen. So, get recommendations. Check out different doctors. If you don’t like one, find another one until you have found one who is both clinically skilled and willing to listen. You really need to be able to speak up, ask questions, and, when you don’t like the answer, advocate for something better.

Really advocate for treatments. Depending on the type of insurance that you have, you might have to go through one type of medication after another, and it can be a big fight — but keep fighting to get the correct medication.

Research as much as you can. Go online and find out everything you can about these conditions. It makes you more powerful. You’re able to discuss things better with the doctor. You’re able to discuss things better with people who have comments about your condition.

And if doing this all means fighting with your insurance company? If it means finding a different doctor? You’ve got to do it. It’s your body, and it’s not going to get better unless you’re able to take care of it.

When you have these conditions, it is going to change your life. You’re going to have new limitations, and you’re going to have to look for the new you, basically. I think it’s important to be willing to reinvent yourself.

Can’t play tennis? Take up something else you can do. Whatever it is, find other things that will work for you.

I was an avid tennis player, and once the arthritis kicked in, I had to stop doing that — so I took up golf. And then my spine started giving me problems, and my doctor said, “Nope, it’s too hard on your back, can’t do golf.” So, then when I couldn’t do tennis, and I couldn’t do golf, I went back to playing percussion. I played percussion in high school, and now I’m a semiprofessional musician. I play percussion and sing in multiple bands and vocal groups.

Keep looking for new ways to cope and enjoy your life.

Penny Greenblatt is a 72-year-old patient advocate who has been living with psoriasis and psoriatic arthritis for most of her adult life. As an advocate and volunteer with the Arthritis Foundation, she’s passionate about sharing her experiences with managing these conditions. She serves as a facilitator of a Live Yes! Connect Group, an Arthritis Foundation support group for people with arthritis and their caregivers.