Voices of the PsA Community: Hear Elisabeth's Story

The definition of understanding is showing comprehension of a subject or compassion or sympathy for another person. For those with psoriatic arthritis (PsA), understanding is hard to come by. The disease is simply misunderstood, and without compassion and understanding, those who live with it often feel alone.

While PsA is a unique and serious condition, there are people who share your experiences with it. You can access a community of support right here.

Hear Elisabeth's Story

Elisabeth lives with psoriatic arthritis and is a dedicated follower of the Psoriatic-Arthritis.com Instagram account. She gently jumped at the opportunity to share her story and raise her voice to help eliminate the misconceptions of PsA.

We're thankful that she did. Let's get started.

What have you learned about yourself since your PsA diagnosis?

I’ve learned quite a few things about myself since my diagnosis. Years of being told nothing was wrong while enduring worsening pain. Being routinely medically gaslit started to wear on me. Knowing that the amount of pain I experienced daily couldn’t be normal, I kept pushing for answers and advocating for myself to doctors.

I learned to stand up for myself, to trust myself. I got to know my body and what’s right for it. I’ve learned to really listen to my body and what it’s telling me. I learned to rest when I need to, and resting has become an act of radical self-care for me.

I have learned that I can do so much more than I thought I ever could, even if it’s not exactly what I had envisioned for myself previously. I learned that those who truly care about me will slow down with me. “The people who mind don’t matter, and the people who matter don’t mind,” as they say.

I learned to let go of the FOMO and embrace the here and now. Most importantly, I have learned just how much my body is capable of, and what it’s not. I’ve learned not to push myself into a flare-up by pushing my body into doing things it simply can’t handle at the time. I never would have known how to do these things without my PsA diagnosis.

How do you play an active role in your health? What advice do you have for someone just starting treatment about playing an active role in their health and treatment?

Playing an active role in my health is the only reason I have a diagnosis. Advocating for myself consistently both before and after I got my diagnosis has been so important.

My rheumatologist and I haven’t found a treatment that works very well for me yet. Keeping track of what helps and what doesn’t, documenting my symptoms and what makes them worse or what causes flares, has been immensely helpful, both to her, to aid in my treatment, and to myself, so I know what to avoid.

For me, especially with also having fibromyalgia, that means I strive to not over-exert myself. I’m constantly trying not to overdo things while still being able to live my life. Staying on top of my medications, using at-home and over-the-counter remedies and medications, heating pads, and acetaminophen when needed, and recently a lot of frustrating phone calls to insurance are some examples of ways I take initiative and play an active role in my health and treatment.

By doing so, I am able to live in a way that isn’t dictated by psoriatic arthritis and defined by suffering. Advocating for myself, practicing self-care, being proactive, and learning about PsA have been the best things I’ve done for my health.

If you had to pick one, which area of your life has been most affected by PsA?

The area of my life most affected by psoriatic arthritis has definitely, 100% been my social life. Not to say it’s dwindled and died but in fact the opposite. Finding communities on social media and forums of people who understand the daily struggles and what it’s like to live with a challenging, frustrating, unpredictable chronic illness (or a few, in my case) has been absolutely life-changing.

Meeting people who can not only sympathize but empathize and offer compassion, advice, friendship, and so much more has been amazing. It’s been eye-opening to see that I’m not alone in this. While I wouldn’t wish a chronic illness on my worst enemy, knowing that there are people who get it and have been through or are going through the same things I am is absolutely the best thing to come from such a difficult diagnosis.

PsA is so unpredictable, and I have online communities of people who get it and can be there for me when I’m unable to get out of bed on a flare day or simply don’t have the energy for big social events. Not to mention we’re living in the unprecedented times of a pandemic, and with the immunosuppressant medications I’m on, big social events are a no-go for now!

Having the resource of the internet, I’ve made so many friends and found so many communities where I’m able to cry with people, cheer them on, help them through tough times, and have all of that reciprocated by people like me. It’s been a true lifesaver.

How can bringing more awareness to PsA help improve the lives of those with the condition?

Bringing awareness to psoriatic arthritis is so, so vital to those of us living with it. So many people in the general public have no idea it even exists. The number of times I’ve heard “You’re too young to have arthritis!” or “Oh, like rheumatoid arthritis? My great aunt’s cousin’s sister-in-law’s son had that, and he’s fine!” when I’ve been vulnerable enough with someone to divulge my diagnosis to them is too many to count.

The people who say “You don’t look sick” or “What’s wrong with you?” when I walk around with my cane are infuriating. There’s not enough information available or spread about PsA. Even doctors told me nothing was wrong for so long when my ANA levels were normal, and they didn’t want to send me to a rheumatologist.

Because PsA is seronegative and so many primary care doctors are taught to look for horses, not zebras, it took me years of going regularly and constantly, being medically gaslit, to get the rheumatologist referral that led to my diagnosis.

PsA has, thankfully, finally been getting more attention in the past few years. Finally, research is being done, but there needs to be a general awareness. We exist, we come in all shapes and sizes, ages and genders, and severity of our condition, and there is no model for us.

Psoriatic arthritis can hit anyone. About 30% of people living with psoriasis will develop PsA, and those without psoriasis can develop it as well. I personally have never had psoriasis and had never heard of PsA before my diagnosis. This should change!

We're ready to hear your voice

The Psoriatic-Arthritis.com community offers more than just one voice of support. We encourage you to come back and check out more Voices of the PsA Community articles, as well as check out our community page.

Thank you for showing up, exactly as you are. We're happy you're here.