What It's Like to Be Diagnosed With Rheumatoid Arthritis at 16
In February of last year I was diagnosed with rheumatoid arthritis (RA). My inflammatory markers were through the roof, I was in so much pain I could barely walk or sleep. My wrists had eggs on them the size of gold balls and my fingers looked like sausages.
When the doctor told me that I was positive for RA I figured that I’d be given some medicine, feel terrible for maybe a month and then move on with my life. I was not aware of the meaning of the word “chronic” and when she mentioned “managing my pain and condition” that would lead to “living a normal life” I was beyond confused. I had no idea what was in store for me in the year ahead of this diagnosis.
To put it simply, 2016 was the hardest year I have ever lived through, but I am beyond proud to say that I did. I made it through it.
After the initial shock of the diagnoses I was put onto a series of very horrible medications that have side affects almost worst than the disease. (Some of which I am still on now and most likely will be on for the rest of my life.) My face swelled up to the size of a balloon, all my joints were still terribly painful and I was so tired that I was asleep for more hours than I was awake.
Trying to describe the pain to people, doctors included, was so hard. It’s only now that I can fully define it. For me, my pain is like screams. At first they were super loud and I couldn’t hear anything else, but as time continued the screams began to quieten ever so slightly. It has gotten to the point where I can’t remember what it is like without the screams so all the screams sound the same. Because I’ve been in such an amount of pain for such a long time, the pain feels the same therefore making it harder to tell whether it is better or worse than before.
Trying to manage all of this was hard enough, but on top of that I was met with the horrible and unforgiving nature of teenagers.
When I got back to school for the year my “friends” told me that I was complaining too much about my symptoms and thought that I was making it all up for attention. They could not understand the “randomness” of my illness, how I could be OK one minute but doubled over in pain the next – and therefore it must all be a lie.
My two closest friends at the time dropped me like a hot potato, one telling me that we had a toxic relationship and that I was constantly bringing her down, and the other hasn’t uttered a word to me other than the common curtsies of hello’s and goodbye’s all year.
I was being talked about constantly behind my back and because I could only manage half days at school I was never there to defend myself.
I found that I was blaming myself for this, telling myself that it was my fault and that I had done this and caused this somehow, that it was my fault for getting sick.
My family was basically my only source of support and positivity. They were and still are my safe place, and I don’t know where I’d be without them. We made it through a year of hell and managed to have a laugh at every opportunity possible.
One saving grace I had (if you could call it that) was that my best friend who lives overseas had been diagnosed with several autoimmune conditions two years prior to me. She has helped me in a way that nobody else could, because she understood exactly what it was like, both to be ostracised by “friends” and how horrendous the medication is.
As the year progressed I found one friend at school that made the year bearable. We get on like a house on fire and even when I was having a bad pain day she’d help me up the stairs or carry my books for me. We supported each other and have come out the other end stronger.
Now that I am about to start a new year and my final year at school, I find myself thinking, and thanking my lucky stars that I am not where I was a year ago. I am so much better, health wise, but I am also a lot more aware of myself and the people I choose to surround myself with.
So, yes being diagnosed with RA sucks, but it has also given me perspective on what does and doesn’t matter in life. I now know who my true friends are, who will support me when I need it, and who will run for the hills when faced with the first hurdle. I know that my family is everything to me, and that I will never lose them. But most of all I’ve learnt how strong I am, I’ve always told myself that I’m not a very strong person but getting through last year has shown me otherwise and I will never underestimate myself like that again.
We want to hear your story. Become a Mighty contributor here.
Thinkstock Image By: DariaZu