If I had known one day that I would wake up sick and never get better, I think I would’ve just rolled over and stayed in bed. Some of my illnesses had shown little signs and symptoms since childhood that we were oblivious to or overlooked as something else, but most sat silently in wait. And when I was 15, just a sophomore in high school, they chose to attack.
It all started with one little pill. I was prescribed a medication that, unbeknownst to us, would cascade a sequence of events that would lead me to the physical state I am in now. I had just started this medication when I went on a school-sanctioned camping trip, in the woods, and without much cellular service.
The first morning, I woke up to sores on my gums and cracked lips, but, hey, it’s dry outside when you're camping, so I chalked it up to being in the great outdoors (and maybe sleeping with my mouth open) and went about my day. But the sores began to spread and the cracked lips turned into oozing and blistering. When I got a low-grade fever, I told myself it was just a virus, and, with the lack of cell reception, I neglected to call or inform my parents, just globbed on the Aquaphor and continued.
By the time I returned home from the trip, the skin on my lips and in my mouth and throat were beginning to slough off and my mother called the pediatrician, who immediately sent us to the ER. What we would learn, in the coming days, and after many, many doctor appointments, was that these were the beginning stages of an immune complex reaction known as Stevens-Johnson syndrome. It can be caused by a variety of medications, and we had been warned prior to me starting the drug, but always considered that the “rare” side effects weren’t seriously a concern.
After a hospital stay and massive amounts of steroids and antibiotics, I returned to school a couple of weeks following the reaction. I thought that this would be the upswing and that everything would be OK from this point forward. I had homecoming to look forward to and a spirit week. Unfortunately, “fine” would not be my outcome.
Following the reaction, I was plagued with unusual gastrointestinal symptoms -- throwing up randomly, fatigue, rashes, joint pain, you name it. A year into these symptoms, I was finally referred to a rheumatologist, who suspected something autoimmune, but all my lab work was completely negative. I continued to see specialist after specialist without any clear-cut answer. I had my gallbladder removed, I had been scoped, poked, prodded, given dozens of medications, became severely underweight, and still had no answer. Doctors continuously blamed my symptoms on anxiety, stress, nutrition, and refused to acknowledge that I knew something was wrong with my body. And I was completely miserable. I missed more school than I attended, and by my senior year of high school, I had had to unenroll from over half of my classes. I had been an avid ballet dancer and had to make significant cutbacks with that, and I couldn’t go out with friends often because illness kept me home. I felt completely ostracized at a time in my life when exploring the world and meeting new people is what you’re meant to do.
And then, it happened.
By this time, I had started to give up hope. Things were not looking up, doctors were not listening to me, and I felt incredibly hopeless about my life. I met with my THIRD rheumatologist, who immediately told me of her suspicions that this was lupus. I thought she was crazy. Here I was, this tiny young adult, hearing that she might have something I thought only affected people way older than me? No way. We drew some new labs that, sure enough, determined I had a positive ANA (which is a lab marker frequently used in the diagnosis of lupus). I also had a skin biopsy done, and all of a sudden, I had a diagnosis. I went from floundering with numerous doctors to finally being able to pinpoint that, hey, something IS actually wrong. But with the diagnosis came a heavy weight of knowing that this is something I will live with for the rest of my life.
Further down the line, we would learn that the immune complex reaction of Stevens-Johnson syndrome was likely the trigger point for my illnesses to rear their heads. My doctors believe that, while always there, many of my diagnoses were dormant prior to that initial reaction that woke everything up.
It took me almost 5 years to get a diagnosis. Five years of suffering and excruciating pain and discomfort and just pure sadness over everything that was (and is) happening. I’m still mourning the life that I once thought I’d have. But I am so privileged to have my diagnosis -- because I know for some, it can take a lifetime -- and be able to use it to interact with and meet some amazing and empowering lupus fighters.
I never thought I’d have to fight for my life. I never thought that at 21 years old, I’d be sitting here writing about how I got diagnosed with an incurable disease. I never thought I’d have to get sicker to keep on living. But these are the cards that I got dealt, the way the cookie crumbled, and so I sit with this. Someone once told me that “I can’t feel your pain, but I’ll sit with you in it,” and I feel like that is my relationship with chronic illness. There is nothing that I can do to change the fate I have, so instead of pitying or trying to deny it, I’ll sit with my diagnosis until I’m comfortable, and then, I can continue to fight.
Photo Credit: Tetra Images via Getty Images
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