Ask the Community Members: Raising Awareness About Psoriatic Arthritis
Psoriatic arthritis (PsA) is not a well-known condition. Unless you live with this chronic condition or love someone who does, the words "psoriatic arthritis" may sound like another language.
If the words themselves are unrecognizable, then forget about understanding the severe impact of PsA. Let's not even get started on what people think they know about it. Without awareness, life with PsA can go unnoticed, unrecognized, and unsupported.
What we wish others knew about psoriatic arthritis
The answer to the lack of awareness is simple: to raise awareness ourselves. It starts with sharing. This can be done at our comfort level while holding to our physical and emotional boundaries.
We hope this Ask the Community Member article series validates your PsA experience and gives you some courage to begin raising your voice to those who may have belittled your experience. We hope you will share your own answer to the question we have asked our community members here.
Mixed emotions come with a PsA diagnosis
"I went for so long with mysterious pains that moved around my body, no energy, feeling so tired when I had just gotten out of bed and wondering if this was all in my head. Then the pain took over again, and I knew it was real. It was comforting to finally have a diagnosis and scary all at the same time. There is no cure." – Rosah
It is so much more than arthritis
"First off, stop calling it psoriatic arthritis. This is the biggest misnomer because it is much more than just 'arthritis.' Psoriatic disease encompasses many body systems; it affects the heart, kidneys, brain, lungs, and nervous system.
And calling it 'arthritis' also makes it something that others, who do not suffer from it, believe they can identify with, and therefore wonder why we have such a difficult time with it. I mean, hell, most people I know have some arthritis somewhere. I tell people I have psoriatic arthritis, and I often get a response like, 'Oh. That sounds terrible. I got arthritis in my knee from (insert activity from long ago here), and it hurts like hell every time it rains.'" – Eric
I am still learning how PsA affects me
"I am still learning about the weight of PsA. I still ask myself daily why this hurts, or I am so tired. After 6 years of knowing the reason and finally being able to name it, I question the reason – still. It's a lot – the constant pain, exhaustion, prescriptions, and the unknown of the future.
All the prescriptions I swallow daily don't take the pain and swelling away. The shot I take every month doesn't touch it, either. And that frustrates and depresses me. I feel like a hypochondriac. Reading about PsA helps me understand and accept that I am not making it up. The pain, the swelling, and the other symptoms that affect my body daily (and that change by the hour) are all real, and I feel them.
When I go to my rheumatologist every 4 months, I hold a lot back because I feel like a complainer. I need to stop doing this because if anyone should understand, it is him, but yet I don't tell him everything. If I don't understand the weight of this disease, how can I expect other people, including my family, to get it?" – Dedra
The impact of the pandemic
"The frustrating thing for me is the invisible nature of PsA and having to explain myself all the time.
As mentioned previously, I haven't accepted having a chronic illness yet. I think if I did, it would get the better of me physically, mentally, and emotionally. So I try to ignore it as best I can and do whatever I can do at any given time. I live day to day, I guess.
The immunosuppressed part of it has hit me quite hard during the pandemic. I worked from home for 18 months after March 2020, several weeks before any official lockdown. I could see what was coming once COVID began affecting Europe so badly.
I did well working from home and continued to hit targets and provide good performance results, but the company I worked with did not help me in any way other than to allow me to work from home. They did not stay in regular contact. I always had to keep them fully informed of how my part of the business was operating without me. I even had to source my equipment!
Eventually, the British prime minister decided he didn't believe in any restrictions anymore, and the country went into denial that it was still an issue. Everyone was asked to return to offices. But I still had the immunosuppressed issue to deal with and could not return to the office of 10 people without some restrictions in place.
I made several suggestions, but nothing was implemented. So after over 30 years of undying loyal service, my career ended abruptly as I was forced to choose between my health and my job.
It was an extremely stressful time and made my health deteriorate rapidly, so I had no option other than resigning. It was an unfortunate consequence of my illness and treatment and a complete lack of understanding from 'old-fashioned' employers. – Greg
You are not alone: Find a supportive community
"If you haven't already, find a supportive community like Psoriatic-Arthritis.com. You will learn from others. Your voice and story will be heard. You will find that you are not alone and you are not crazy :)" – MaryLynn.
Ready to connect with others who understand?
We at Psoriatic-Arthritis.com are committed to raising awareness of this unique, stand-alone condition. For far too long, PsA has been swept aside as just another arthritis condition, which is unfair and invalidating.
We hope you not only feel seen in our community members' experiences but feel safe and willing to share your own. The ripple effect happens every day here in this supportive online community. You never know whose life you may touch with your insight.
Consider joining our community as your first step in raising more awareness about managing life with psoriatic arthritis.
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