If you haven't known me for that long, many people don't know my story with chronic illness. Chronic illness and autoimmune diseases are something that many people deal with, but you can't necessarily see it on the outside all the time. This is usually internal struggles and not everyone talks about these problems.
I think that a great way to raise awareness for this issue is to share your own story with others, so here's mine:
About late 2019 I began to have pain in my knees and ankles, which made it hard to walk. It quickly became excruciatingly painful to walk and do everyday tasks. At this point my fingers and wrists also started "locking up" and was hard to move from the pain. I couldn't do basic things such as writing or buttoning my jeans anymore. This was the point that I realized that something was really wrong.
My parents took me to the emergency room where they ran blood tests and found that my inflammation levels were extremely high. The doctors came in and referred me to a rheumatologist immediately. The rheumatologist said that they didn't know what was wrong or what I had because I "didn't fit neatly into a box" in terms of perfectly matching up with an illness.
At this point they didn't really do much for me but run tests because they didn't know what it was to be able to treat it. For a little while they thought it might've been JRA (Juvenile Rheumatoid Arthritis) but quickly ruled that out due to blood test results. Then they thought it might have been Leukemia. I remember sitting down with the doctors and them telling me about the possibility of going through chemo and what would happen to me if the tests came back positive for Leukemia. For them to even test for Leukemia it consisted of taking bone marrow.
The day of the bone marrow procedure a day I'll never forget. It was a day full of faulty IV's, bloodwork, CT scans, not being able to eat or drink anything for hours, and the procedure itself. I specifically remember walking into the operating room and seeing the metal table under the big spotlights and several doctors standing around the table watching me as I walked in, knowing what they were about to do.
Long story short, the tests came back negative for Leukemia, but they still didn't know what was wrong, so I was still going untreated and still in pain. After a few months they came to the conclusion of it possibly being Lupus. They started treating me with Plaquenil, which at the time was hard to get because people were using it to treat Covid.
I was diagnosed with Lupus and treated for it, which over time started to work to take the pain away. I was told I would probably not play soccer again (I played since I was 8) and that I would need to be closely monitored for a long time. I would have to get bloodwork once a month to make sure that my inflammation levels stayed down and weren't coming back up.
At this point, we were all being homeschooled from Covid, so I lost all of my friends because I was either in too much pain to go anywhere or was at the hospital or a doctor's office and we had lost all social aspects because of the Covid isolation. I had a bad immune system because of this, so I was told that if I got sick that it would probably kill me, so I just isolated myself from the world at that point. This all affected my mental health because if you're told you can't hang out with people, you lose all of your friends from becoming sick, live in a constant state of pain, and lose the ability to do everyday tasks such as walking or writing at the ripe age of 14, yeah anyone would lose their will to live.
Fast forward to now, four years later, I am now in remission and living a normal life again. I did end up going back to playing soccer for my last two years of high school and now shoot archery as a collegiate athlete. I'm not taking medications anymore or have to get bloodwork as often anymore. I have moved out of home and am now studying to get my degree six hours away.
There are many people that struggle with invisible illnesses and not many people talk about it. This is your reminder that it does get better, and pain is just temporary. This experience has shaped me into the person I am today and realize that maybe there was a reason that this happened to me because I wouldn't be where I am today if I hadn't endured this.
Always be kind to others because you don't always know what someone could be going through that you can't always see on the outside. <3
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