Chronically Ill and Undiagnosed at 21
An honest look at being a human guinea pig, dealing with doctors, never getting answers, and always being told your too young for these problems.
Sitting in my doctor’s office for what feels like the millionth time, I try to ignore the stares from the older women waiting with me. I can feel their eyes on me, probably wondering why a healthy looking young woman is on a first name basis with the secretary, why she’s there on a weekday morning, and what could possibly be wrong with her.
I’ve been asking myself the same questions for years now.
This week I’m here because I’ve gone through yet more testing to try and get me closer to an answer. At this point, I've lost track of how many different things I've been tested for.
Once I'm finally called in, my doctor gives me the results of the most recent tests and they come back the way that most of my test do; negative, low, or inconclusive. I'm yet again no closer to getting answers to why I've been sick and in pain since before I was even in my teens. The one piece of good news my doctor gives me is that I'm finally on a waiting list to see another specialist, but there's a catch; the waiting list is a year long.
This means that I'm at least one more year further away from getting an answer. From getting validation to the pain and suffering I've dealt with for years. From finally being done with the not knowing.
At 12, I started dealing with issues with my stomach so bad that I was sent for an ultrasound. That came back inconclusive. At 15, my issues worsened and I became chronically nauseous for weeks at a time. As it continued, the time in between flareups got shorter and shorter until I was sick for months at a time with little relief. For anyone who hasn't had the pleasure of chronic nausea, you may not know that it can cause pretty bad brain fog. In my case, brain fog that lasted from ages 15 to 20.
That's five years of blurred thinking, and memories that are essentially non existent. Five years of barely being able to think straight.
In those years where I woke up sick basically every day, I tried everything. I tried at least a dozen different diets, I saw lots of doctors, did lots of tests; and the closest I got was getting a positive blood test for celiac disease. Which then was overturned by my gastroenterologist giving me my scope results, and basically diagnosing me with hysteria. That was not a good day.
When I turned 20, I figured I'd try yet another diet and go whole food plant based. And it actually worked! Finally I didn't wake up nauseous everyday, and I thought my problems were all solved. But it's almost like when you take out the background noise and then you can hear everything else that's going on.
Once I didn't have constant nausea blinding me from everything else, I started to realize that I was still physically exhausted, in tons of pain, and had a headache most of the time.
And that's why I'm doing this.
I'm putting myself through test after test, waiting forever in doctors' offices, and trying everything to deal with my remaining symptoms, because I want more. I want to be able to live my life. I don't want to feel like this. And after everything I've dealt with for so long, I want to get answers so I can move on with my life and actually enjoy my 20s.
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