2 ms·

This was practically my brother and me for a couple years. Eventually it got labelled "chronic fatigue" (one of the biggest umbrella terms ever). I have no id

by Groxx 12y ago

This was practically my brother and me for a couple years. Eventually it got labelled "chronic fatigue" (one of the biggest umbrella terms ever). I have no idea if it's at all the same thing, but I can absolutely attest to fighting the same stigmas. We went through a couple doctors who were convinced we were faking everything because the standard (and plenty of non-standard) tests didn't show anything they learned in school. We had fights with the school system (eventually switching to homeschooling (which is far from stigma-free itself)). There was plenty of family stress, as you can imagine. It's infuriating and depressing and ludicrously hard to find anyone who's willing to work with you. At least we have the internet now, so the crazies can find each other. Obviously a double-edged sword, but otherwise things like this never get noticed.

raelshark 12y ago
Seems like the experience is pretty similar with a lot of these disorders. I have an autonomic nervous system problem that overlaps significantly with "chronic fatigue," and I've seen a lot of patients go through similar "why can't you just..?" discussions with family and friends. I've also had similar experiences to what you describe with your school situation, but also with employers. It's a special kind of stressful when your livelihood is on the line and your employer won't take your issues seriously, and you have to struggle to medically validate your circumstances when you can't find a doctor who understands it either. For most people with poorly understood issues like these, getting an actual diagnosis is like an emotional and social breakthrough - complete validation that something's really wrong.
- kolinko 12y ago
  I recently found a book that's all about these kind of diseases ("invisible chronic diseases") - it has whole chapters dedicated do dealing with the problems you described. http://www.amazon.com/Sick-Tired-Feeling-Invisible-Chronic/dp/0393320650 http://www.amazon.com/Sick-Tired-Feeling-Invisible-Chronic/d...

by Groxx 12y ago

raelshark 12y ago

Seems like the experience is pretty similar with a lot of these disorders. I have an autonomic nervous system problem that overlaps significantly with "chronic fatigue," and I've seen a lot of patients go through similar "why can't you just..?" discussions with family and friends. I've also had similar experiences to what you describe with your school situation, but also with employers. It's a special kind of stressful when your livelihood is on the line and your employer won't take your issues seriously, and you have to struggle to medically validate your circumstances when you can't find a doctor who understands it either. For most people with poorly understood issues like these, getting an actual diagnosis is like an emotional and social breakthrough - complete validation that something's really wrong.

kolinko 12y ago
I recently found a book that's all about these kind of diseases ("invisible chronic diseases") - it has whole chapters dedicated do dealing with the problems you described. http://www.amazon.com/Sick-Tired-Feeling-Invisible-Chronic/dp/0393320650 http://www.amazon.com/Sick-Tired-Feeling-Invisible-Chronic/d...