First in the Family
I started to experience pains in my feet and legs at around 12. Doctors kept telling me “ that it's just growing pains, “it’ll go away”. The podiatrist told me that I just needed to wear special orthotics, do special stretches and get massages done regularly on my calves to stop the pain and correct my walking. If anything did seem to work, it was only a temporary relief. The pain always came back worse than before.
My family told me to just suck it up. I couldn’t just complain all the time because it gets annoying to hear about, and surely I wasn’t really in THAT much pain. I looked completely fine.
I could no longer spend whole days at school anymore. I was sent home crying every day because I just couldn’t walk anymore. My siblings just had to watch as my pain got worse. It wasn’t until a few years later that my younger siblings started to complain occasionally that they were tired or sore after a long day of school, but nothing too concerning.
Within a week of starting year 11, my mum drove me to the emergency room because she had finally decided that I needed proper help. There was something wrong that doctors hadn’t found yet, we just needed somebody who would listen and not just dismiss it as “growing pains” or “attention seeking”.
What we thought would only take about a day was almost a week-long stay in the hospital; I was their ‘mystery patient’. All of my tests came back as normal, but I could barely walk without assistance and was in excruciating pain all the time. Nobody knew what was wrong with me. I eventually left the hospital with multiple mobility aids (crutches, shower chair, over toilet aid, and installed rails in the bathroom at home), but had even fewer answers than before. I relied on using crutches to walk for about a year and a half to remove at least a little bit of weight from my legs.
I eventually saw a neurologist to rule out any neurological conditions. She then referred me to a rheumatologist. The rheumatologist checked my joints and asked me some questions about my skin and pain. After ruling out any other conditions, I was finally diagnosed with Juvenile Psoriatic Arthritis. Finally, after about 6 years, I had an answer!
My siblings' complaints of pain in their legs and hands became more regular, so they were also seen by the rheumatologist. My younger brother and sister were told almost immediately that they had psoriatic arthritis because they had a direct relative who was already diagnosed (me). I should’ve been happy for them. They had answers and would be able to start the process of finding the proper medications and treatments for themselves, but I wasn’t happy at all. I had just gone through what felt like an eternity of chronic pain and being ignored, just for them to only endure a fraction of that time. I had done every trial, every test, and ruled out every possible condition to finally after years be told what I have. They only had a couple of years of pain before they received a diagnosis.
As happy as I was for them to have answers, I was jealous and felt that they had the “easy way out”. I had just suffered for so long. It felt unfair that they didn't need to go through as much as me to get an answer. I did most of the tests for them.
Although I was upset, I needed to come to terms with the fact that we have the same diagnosis, so it's not as important as to how long it took to receive our diagnosis. We are all on the same page and can support each other when our friends and family may not be able to understand or relate as much.