8 Things I Wish People Understood About Psoriatic Arthritis

This unpredictable and often invisible illness is hard to manage — and even harder to understand.

I’ve had psoriasis since I was in kindergarten. I’d never even heard of psoriatic arthritis (PsA) — nor did I know that psoriasis could lead to arthritis — until I received a PsA diagnosis at age 35.

After 10 years of living with PsA, I’m still trying to wrap my brain around all of its intricacies.

One day, I can be flat on my back trying to figure out how to roll over without wincing in pain.

Other days, I’m hunched over my garden pulling weeds and planting flowers all day long. I treasure those days. Those times when I feel almost normal.

This roller coaster of unpredictability in my symptoms makes it hard to understand, let alone cope with or make plans for.

I’m still figuring it out, so I know that I can’t expect my loved ones to fully understand this disease. That said, here are eight things I really want people to understand about living with psoriatic arthritis.

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I don’t look sick

Psoriatic arthritis is often an invisible illness.

Medications can help control joint swelling and skin symptoms, but joint pain and fatigue still remain for many people and vary in their severity.

I don’t say it out loud every time something hurts, and I don’t admit to everyone that I need a nap. This also means PsA can be a very lonely disease.

I spend a lot of time inside my head navigating invisible symptoms so I’m not a downer to my family and friends.

The road to diagnosis is long

There’s no blood test to confirm you have PsA. The diagnosis is a medical puzzle.

When my symptoms first emerged, they started with hip pain that I mostly felt at night. I bought a new mattress thinking that was the issue. Then, my right foot swelled so much I couldn’t put shoes on. My right knee also swelled.

Something was definitely not right.

My doctor ran blood tests for gout and rheumatoid factor. They checked for fractures through X-rays.

I bounced between an orthopedic surgeon who planned to operate on my swollen knee and my primary care physician. It was the orthopedic surgeon who finally referred me to a rheumatologist, where I received the proper diagnosis of PsA.

Treatment isn’t easy either

Figuring out a treatment that works was a heartbreaking period of trial and error.

It also included fighting with my health insurance company for access to newer, better, and therefore more expensive treatments.

At the time, biologics were new on the market. My health insurance required many months of failed treatments before they would approve a new one. This meant the disease continued to progress each time a drug didn’t work for me.

I walked with a cane, controlled swollen joints with steroids, and spent a lot of time in bed on a heating pad. All of this while coping with the fact that I had gone from being an active mom to feeling like a piece of furniture in my own home. I even had to quit my job.

While our family adapted to mom in a medical crisis, I satisfied my health insurance by going through their approved list of drugs that all ultimately failed. After 6 painful months, my rheumatologist won the fight for my access to biologic injections.

Biologic treatment was a game-changer for me. It gave me my quality of life back and it’s the treatment I still use.

Fatigue is a constant negotiation

PsA is an autoimmune disease, which means my immune system is always on the attack.

The fatigue is like always having a bad cold, except I’m not fighting a virus, I’m fighting my own body. It feels like my head is in a fog and my body feels run-down and heavy.

There’s no runny nose to signal to everyone else that I’m constantly in the midst of battle. I’ve always wanted a T-shirt that read, “I’m so bad, I kick my own ass.”

Rest has to be built into every action plan. Vacations and holiday commitments are brutal. Even work and household chores require daily time allotted for rest.

Movement is necessary

I know what you’re thinking, “Wait a minute, you just said fatigue was the battle!”

Yes, however, I also can’t sit in one place for too long. Joints need movement to remain loose, and if I don’t move enough, it feels like I’m turning to stone with joint stiffness.

I walk or exercise and stretch daily, gauging my limitations as I go.

This makes travel challenging. For example, road trips require frequent stops for walking.

Every day is a balance between getting enough exercise and not overdoing it, and sometimes I don’t know I’ve overdone it until it’s too late. Sometimes, what’s too much one day is not enough the next.

Most times, I know when an activity will be too much and I plan accordingly. It takes practice, experience, and listening to my body. Even then, I sometimes get it wrong.

There’s a lot of fear, anxiety, and sadness involved

One morning while making breakfast, back spasms took me to the floor and an ambulance carted me to the hospital.

Another time, my knee flared for weeks and I struggled to bend it. It was painful and difficult to get in and out of bed, never mind going up and down the stairs.

Once, I had to give up wearing my fitness tracker for 6 months because my wrist flared.

I’ve lived with this disease for more than 10 years now, and it’s still hard for me to cope with new pain and I still can’t identify all the triggers.

With pain comes worry that it may be my new normal.

I never know if pain is here to stay and if I’ll need to cope with it indefinitely. Sometimes, one bad day is just one bad day. Other times, it lasts for months and involves physical therapy or surgery before I get any relief.

And yes, sometimes it is a new normal that requires a workaround in my life. Regardless, new pain is fraught with fear, anxiety, and sadness that feels a lot like grief.

Because my treatment requires immunosuppressant drugs, my body’s defenses are muted, leaving me susceptible to infections.

Even before the pandemic, I didn’t open public doors or push elevator buttons with my bare hands and I always had hand sanitizer in my car. Still, I’ve contracted my share of oddball infections.

Now, we’re in the midst of a pandemic that is raising the fear response in so many of us who are immunocompromised.

It’s difficult to access care

Since my diagnosis, I’ve lived in three different cities. Finding a rheumatologist I like and trust has been a challenge.

There’s a shortage of rheumatologists and it’s getting worse. It’s projected that by 2030, the demand for rheumatology professionals will exceed the supply by 102 percent.

For this reason, I travel to teaching hospitals to manage my PsA in fellowship programs. Not only is the care backed by the latest science, but I hope I’m part of a solution that not only helps me but helps strengthen the discipline for future rheumatology patients.

PsA is not my identity

Most people I encounter have no idea that I have PsA. My daily health management is a part of my life that I accept, but I will not allow it to keep me from having a full life.

I’m active professionally and in my community. I do my best to control what’s within my power.

I don’t want pity or exceptions made, but I want people to truly understand and go with the flow when plans change. Let me decide if something is too much. Don’t make assumptions or exclude me because you think you know.

Enjoy dancing with me on good days, but also understand that my bad days warrant rest.

When in doubt, ask.

Medication can slow it down, but PsA doesn’t stop. Thanks to newer treatments, it’s not a fast, downward slide. It’s more like a roller coaster, with ups, downs, and curves.

I plan to do all I can to enjoy the ride.

Article originally appeared on February 16, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on February 17, 2021.