Undiagnosed Symptoms Are Just as Real #IIWK13

Just a few weeks ago, I found out about this year’s Invisible Illness Week, which starts today. I already heard of it years ago, but never quite took the time to write for it. Until now. Today, I want to share my experience to get awareness of what invisible illness is like, and especially, how it can take years to get a proper diagnosis (and hopefully treatment).

I have suffered from my symptoms, which include fatigue, random aches and gastrointestinal symptoms since 2007. I went to my doctor for the first time in late 2007, having had diarrhea on and off for half a year. She chalked it up to a stomach bug. Then, when I got it through to her that it’d been going on for months, I was examined and the doctor found I was actually constipated. Well, nice. Drink lots of fluids, eat lots of fiber, but the symptoms did not go away. I was eventually put on a laxative, which worked to some extent but gave me bad cramps.

For the fatigue, I got various blood tests and these revealed iron deficiency, then B12 deficiency, then nothing. I was told that the random aches were just stress. Not that this makes them go away, but oh well.

My symptoms are still there, and I don’t have a diagnosis, although I self-diagnose as having irritable bowel syndrome, because I honestly don’t buy into the constipation theory. I feel out of place in the chronic illness community not having a diagnosis, and of course I want my symptoms to be something simple that isn’t a chronic illness. Then again, it’s not like symptoms are less real just because they don’t have a label to them. Many people, like myself, take months to years to go see doctor, longer to see the right doctor, and maybe I’ll never find out what’s really going on with me or get adequate treatment. Maybe I will at some point. I hope so.

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6 thoughts on “Undiagnosed Symptoms Are Just as Real #IIWK13

  1. You wrote, "I feel out of place in the chronic illness community not having a diagnosis, and of course I want my symptoms to be something simple that isn't a chronic illness. Then again, it's not like symptoms are less real just because they don't have a label to them."I understand how hard it can be to not have a diagnosis and many people do. Even those who have a name for their illness often spent years getting the diagnosis–or at least, the right diagnosis. We're sorry you belong to our "club" but honored to have you!

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  2. I am going through that right now!! I have several diagnosis- rheumatoid arthritis, fibromyalgia, asthma,diverticulitis and now I have lung problems. I have had several tests, too many chest x-rays to count and recently I had a bronchoscopy where they put a tube in my mouth and took pictures and specimens. The test were inconclusive. The doctor sent the photos and specimens for a second opinion. Nobody knew what disease we were dealing with. The lung doctor requested I have an in-patient procedure. A cardiothorax surgeon made 3 incisions in my right side. He got more pictures and more specimens. Again it was inconclusive and sent for 2nd opinions. Nobody can tell me what is wrong, what's causing it or how to fix it. It is very upsetting. It has taken all summer to not know anything. I won't be going back to specialists or trying to get it defined.

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