From 2015 until recently, I had been dealing with an undiagnosed chronic illness. Not only one but multiple that plagued my body. The start of college became the start of my young adult body starting to deteriorate.
According to Right as Rain, rare diseases might not be as rare as people think. Rare diseases more often mean that the disease is under-diagnosed and researched, rather than being few people in the world that have that particular sickness.
I had been passed around from doctor to doctor for seven years, racking up medical fees and frustration. Up until recently I had no hope to be diagnosed. Doctors are told to look for the most common diseases, and to not refer to rare diseases first.
According to The Mighty, labels for an illness can help people communicate with doctors and friends what one is going through without having to go into depths of symptoms, severity, and longevity. When someone gets negative test result after negative test result, desperation sets in. Imposter syndrome can creep in and make someone question whether they really are sick or sick enough to be seeking treatment or answers.
Some people may see the chronic illness community and think that people want to be sick when they ask for a diagnosis. Those people who have illnesses do not desire to be ill but do wish for an explanation for symptoms. A name for the beast that is destroying their body is what is craved. A beast not named cannot be fought.
The start of chronically ill TikTok became my haven. I saw people my age who had my symptoms. I saw myself and my symptoms in their bodies. I came closer to being diagnosed by researching their illnesses and linking them back to my symptoms. I had a lead into figuring out my life long health puzzle. I also had an in with a community of like-minded people who showed their bodies kindness and grace, which was what I was desperately craving.
I know that from a chronically ill standpoint I am extremely fortunate to be able to be diagnosed with my diseases now. Everyone that has a chronic illness may not be diagnosed in their lifetime.
Doctors finally grasp the urgency that I have when it comes to my body malfunctioning.
Now that I am diagnosed I can breathe freely again. Treatments are starting to work and minimize my symptoms. I have hope about the future when it comes to living in my body.