Voices of the PsA Community: Hear Cailey's Story
As if the physical symptoms of psoriatic arthritis (PsA) weren't enough, the emotional toll of this chronic condition can weigh heavily. A painful flare can lead a person to have to cancel the most exciting plans. The feelings that follow may include being unreliable, lost, alone, and angry.
We can hope that other people understand, but do they really? While the impact of this painful disease might not be truly understood by our family, friends, and loved ones, those who live with this condition know that impact well. And it's so important to connect with people who understand.
Hear Cailey's Story
Cailey lives with PsA, and she shared with us her biggest inspiration, the importance of community, and how to explain PsA to others who may not get it. Cailey, thank you so much for your thoughtful words and your commitment to raising awareness about psoriatic arthritis – we're grateful.
Read on for what Cailey had to say.
Who/what has been your biggest inspiration through your journey with PsA?
Honestly, @_cute_n_chronic_ on Instagram. I found Jenny when I was waiting for a diagnosis. I literally went on Instagram and searched psoriatic arthritis and other related searches. She's great, a nice person, and a young woman dealing with the same thing.
Having a career, having new pets, getting married, all with PsA. They're all things I have done or will do in my life, and she shows it's possible. Also, Molly Burke on YouTube introduced me to the idea of finding your disability community years before I even had PsA.
If it weren't for her, I probably wouldn't have thought of looking for others dealing with what I deal with.
How has finding community helped you along your PsA journey?
I've learned I'm not alone. There are other people going through the same things. There are people who have been dealing with PsA a lot longer than me, and they lead successful, fulfilling lives. One person I met had to go through joint replacement surgeries. She is a mom to two young girls and works a full-time job. That's inspiring to me.
One of the first things I was worried about as a young woman who wants kids of my own in the future is how I would ever be able to keep up with young kids. There are all kinds of people with all kinds of backgrounds and people with PsA more or less severe than my own living normal lives.
These people take time out of their own days to be a part of the community to give hope to people who maybe are starting medication for the first time, helping others understand what actually is going on with their bodies in a way that's easier to understand than what a doctor would say to explain.
There are apps to be a part of, Facebook groups, websites, and people sharing their stories on Instagram. There is a community out there for anyone.
How do you tell others about your PsA? Is your diagnosis something you share openly or only with those closest to you? Why?
I personally only mention it when it comes up. Oftentimes I get someone that's significantly older than me saying something along the lines of, "Oh, you're so young, you wouldn't understand." As a 23-year-old, I do understand. I typically joke it off, saying, "Oh, I have arthritis; I know how it is."
That normally starts a conversation about how and why. I don't mind talking about it, but I never go out of my way to bring it up. I have been at my job for around 7 months, and only a handful of people know. But it isn't a secret. If someone overhears the conversation, if I'm talking to my coworkers about a new medication I'm trying, I never feel embarrassed.
Maybe that person is someone who will understand or be in the same boat I was in a year ago, having pain and having no clue why. Or even better, maybe it's someone who never has heard of PsA, and I get to educate someone new organically.
How can bringing more awareness to PsA help improve the lives of those with the condition?
About a year before my PsA symptoms started, my scalp psoriasis was getting more severe, and I just thought I had bad dandruff. It got to the point where my scalp would bleed. I went to the doctor out of embarrassment, and she said, "Oh, that's definitely psoriasis." I had no idea that was a possibility.
Then when I started having symptoms of PsA, I thought I must have injured myself and that's what my pain was from. I was only 21, so I never thought I could have arthritis. It took me months to start googling my symptoms. I had pain in my wrist, misdiagnosed as a broken wrist, and my feet hurt so bad I could barely walk.
I thought my enthesitis was just plantar fasciitis, and I thought my SI joint pain was a herniated disc. It just kept getting worse, and I finally looked it up: psoriatic arthritis. Had I known that was a possibility, I could have been getting treated months earlier.
Not only did I not know what was happening to my body, but most times when I talk to others about it, they have also never heard of it. Then I have to explain what it is and how it affects me. People only seem to understand if I compare it to rheumatoid arthritis and if they personally know someone who suffers that condition.
If there were more awareness, I would be able to not have to explain my pain every time I mention it to someone else who has never heard of it. I could just say, "I have psoriatic arthritis."
A community of support is waiting for you
Inspired by Cailey's words? We are, too. Looking for more insight from those who live with PsA? Check out the Psoriatic-Arthritis.com Forums page, where real people living with PsA are asking questions and offering support about managing life with this disease.
Our community is waiting for you.
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