My long list of chronic illnesses makes me feel like a walking medical journal
Have you ever met someone with five chronic diseases and 20 comorbidities?
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Becoming sick is an inconvenience for anyone. Feeling unwell means not being able to complete tasks, missing work or school, and possibly taking medications that cause side effects. Now imagine being sick with multiple chronic and rare illnesses, along with nearly two dozen comorbidities. Welcome to my living nightmare.
By the time I was 34, I was in a hospital room being diagnosed with my third rare disease, immune thrombocytopenia (ITP), in addition to lupus and hypermobile Ehlers-Danlos syndrome. My immune system already attacked my body during lupus flares. Now it was destroying my blood platelets, too. Great, I thought. Little did I know, though, that ITP would become the easiest of my chronic illness battles.
Having little to no blood platelets can quickly become a dangerous situation. Thankfully, ITP comes with definitive symptoms that give me a decent warning of impending doom. Sudden unexplained and excessive bruising, nosebleeds, fatigue, and petechiae (little red dots on my skin) are my usual symptoms. When these occur, I know it’s time for blood work to check my platelet levels. My ITP flare-ups aren’t a constant issue, so despite the rarity and scariness, it’s my easiest disease to deal with.
Always on the lookout for symptoms
Two years later, in 2020, my deadliest ITP flare occurred in conjunction with two new rare diseases: atypical hemolytic uremic syndrome and thrombotic thrombocytopenic purpura. We suspect an asymptomatic bout of COVID-19 triggered ITP and the other two diseases, which means more complications for my immune system. Not only were my blood platelets being attacked, but now my red blood cells were, too. My plasma was becoming useless because it was full of negative elements from my dangerous immune system. And my immune system was causing tiny blood clots in organ tissue in my kidneys, liver, heart, and uterus.
Today, I deal with a constant barrage of a few symptoms from each disease every week, and sometimes every day.
My long list of comorbidities includes petechiae, May-Thurner syndrome, osteoarthritis, severe edema, uncontrolled hypertension, fatigue, postural orthostatic tachycardia syndrome, nosebleeds, bleeding gums, post-exertional malaise, obesity, stage 4 chronic kidney disease, dislocating major joints, gastrointestinal issues, skin rashes, muscle cramps, bone pain, anxiety, depression, and PTSD.
Comorbidities are the daily inconveniences that healthy people don’t think about. When someone ponders a specific disease, they usually think about the obvious symptoms. But most people don’t know about all the extra issues, symptoms, and reactions our bodies can have in addition to our actual diseases. When I was researching for a previous column, I learned that it’s common for people with chronic or rare illnesses to have multiple illnesses.
Five rare, chronic illnesses and 20 comorbidities are a lot for anyone to handle. Yet, here I am, living like I’m a walking medical journal. Sometimes I’m relatively thriving, while other times I’m struggling. But I’m always on the lookout for symptoms and warning signs in order to address the flares head-on.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.Â
