Hi! My name is Alex (or Al), I’m 19, and I use he/him pronouns.
I have been fighting against progressive, chronic, undiagnosed symptoms most of my life, but only within the past two years did things really take a turn for the worse.
For starters, growing up I really struggled keeping up with other kids. I dreaded gym class because it would leave me in severe pain, but I desperately wanted to try to fit in, so I often pushed myself too hard. This led to not only worsening of my chronic pain, but growth plate fractures, dislocated ribs, and a weak immune system.
Up until the 8th grade (when I got sinus surgery), I had chronic sinus infections every other week. I’ve been on more antibiotics than I can simply name. I also had a bad case of the flu every flu season, and eventually had a horrendous case of mono.
I’ve spent most of my life dealing with chronic pain. A lot of my childhood was spent with Physical Therapist, Occupational Therapist, Ear Nose and Throat doctors, followed by frequent family doctor visits.
Around two years ago, my chronic pain started worsening. I started getting this tingling behind my eyes, that often lead to dizziness. I remember the first moment this happened vividly. I was driving home on the highway one day, and I got hit with this intense eye tingling. It was so bad, I had to pull over to the side of the highway and I actually got sick.
Two years later, my health has rapidly declined. The tingling behind my eyes has now spread to my whole face and scalp, and will spread into my hands and feet as well. I have frequent falls and unsteady balance followed by a slew of GI issues, tremors, fatigue, burning skin, heat intolerance, and difficulty swallowing.
I’ve seen many medical professionals within the last year, all specializing in different medical fields. There have been a couple that have suggested certain conditions, but no definitive diagnosis have been made. There have been many medical professions that have been invalidating, belittling, and accusatory, which is unfortunately something I know many chronic illness patients face. I’ve had test after test done and everything has come back negative.
Despite all of this, I am hopeful I will get a diagnosis one day. It is less of the diagnosis that matters to me, than the treatment. Without a diagnosis, many doctors won’t treat the symptoms which is something I am continuously struggling. I do face the constant fear that by the time the doctors find what’s wrong, will there be some type of permanent damage? I unfortunately can’t predict the future, but I am hopeful that one day I will receive the medical treatment I rightfully deserve.
But until then, I will keep fighting!