My PsA Journey
I started experiencing symptoms when I was 25. First, it was a dull pain in my feet, then my ankles. A month later, I started feeling a similar pain in my knee, then in my lower back, and then my hands.
As an athlete who had a tendency to overdo it, I thought it was from running too much. I stopped all forms of exercise, and yet my symptoms only got worse. What began as minor aches turned into a deep, throbbing pain, so much so that it would wake me up at night, making it difficult to sleep. As a teacher, soccer player, and New Yorker, it disrupted my way of living. I went to doctor after doctor who shrugged their shoulders and told me I just needed to "rest." Still trying to find solutions, I made appointments with chiropractors and multiple physical therapists, but nothing seemed to help.
Rare diseases run in my family
It was only when I spoke with my brother, who was diagnosed with rheumatoid arthritis and Sjogren's disease in his early 20s, that I started to consider that what I was experiencing could be something rheumatological. I connected with my cousin who was diagnosed with celiac-induced arthritis in her early 20s. Also, I’d had experience with rare diseases with my mother, who passed away from Creutzfeld Jakob’s disease, a fatal brain disease that affects 1 in every 2 million people. I had watched my mom and my dad fight for a diagnosis until the very end. As I began my research into my brother’s disease, I learned that autoimmune conditions are often genetically linked.
"I’ve never heard of arthritis that started in the feet"
While doctors’ tendency to "normalize" might be a method to try to dispel worry, this response can delegitimize very real symptoms of pain. A patient in pain is already coming in from a place where they are not 100 percent because of whatever is causing their symptoms. Medical gaslighting will only make them feel worse about seeking treatment, which is the exact opposite of how you want to treat autoimmune arthritis.
One night, my pain was so bad that I visited urgent care. I was treated by a doctor who herself had an autoimmune disease. "This is not normal," she told me and went on to share her story about finding a diagnosis. She urged me to see another rheumatologist as soon as possible.
You are the expert on your own body
I cannot emphasize enough how much your experience matters. I had doctor after doctor seek to "normalize" the symptoms of my disease, instead of trying to find thoughtful ways to treat me. It wasn’t until I sobbed at the doctor to take an x-ray of my spine that I was able to move from x-ray to MRI, to a diagnosis of psoriatic arthritis by November 2021.
Connect with others
The reality is that unless someone else has autoimmune arthritis, it is difficult for them to understand precisely what you’re going through. Connecting with my brother about doctors, medications, and symptoms helped me fight for diagnosis and treatment. I have also found comfort in following Spoonie accounts on social media with relatable and humorous chronic illness content, with a particular appreciation towards unempathetic doctors.
A path towards accepting the unknown
I am on my fourth biologic, and I am not in remission yet, which means I am stuck in a weird limbo of not knowing when, or if, I’ll get back to the place I was before I started experiencing symptoms. I know that some days are harder than others – those are the days when I’m in too much pain to do much of anything and try to be extra gentle with myself – by curling up with a good book, a silly tv show, or writing. And some days – when my pain is at a 2-3- are awesome, and I feel like the city is my oyster.
When I initially got my diagnosis, I thought I would be able to start treatment and essentially be "cured." As an incurable chronic illness, this was not a realistic expectation. Nonetheless, it’s hard to not get angry at my body, a body that once played college soccer, ran half marathons, and danced til 2 am. But I am trying to work towards acceptance – that this is the body that I have, that got me to this place, and that wakes up each day to face a life-long battle against arthritis.
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