3 ms·

It's kind of remarkable how little we know about the most basic functions of our bodies. It's also interesting how much stigma there is attached to a disorder

It's kind of remarkable how little we know about the most basic functions of our bodies. It's also interesting how much stigma there is attached to a disorder like this, because of how it presents. Obviously, if a person can't wake up, they're lazy or malingering, or their diet is off, or something. As much as anything, the social aspects around the disease make the identification and treatment very difficult.

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...
fragmede 12y ago
> It's kind of remarkable how little we know about the most basic functions of our bodies. We have some of how it works; GABA was first synthesized in 1883! The problem is that we have no idea of the situation on an individual level. In this case until the spinal tap came back positive for abnormally high GABA levels, all we have to go on is the patient's report. Fortunately in this case, high GABA levels can be measured via a spinal tap and while the article ends abruptly, the 'what next' is that his GABA is too high, so... lower it. Hopefully a drug can be found that does that sustainable. Unfortunately, for other mental disorders, there's no such test, and no way of knowing what's chemically wrong, so for depression which probably has a whole host of causes, all we can do is try different drugs until we find one that works for a particular patient. For now, the medical tricorder remains unfortunately in the realm of science fiction.

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...

fragmede 12y ago

> It's kind of remarkable how little we know about the most basic functions of our bodies. We have some of how it works; GABA was first synthesized in 1883! The problem is that we have no idea of the situation on an individual level. In this case until the spinal tap came back positive for abnormally high GABA levels, all we have to go on is the patient's report. Fortunately in this case, high GABA levels can be measured via a spinal tap and while the article ends abruptly, the 'what next' is that his GABA is too high, so... lower it. Hopefully a drug can be found that does that sustainable. Unfortunately, for other mental disorders, there's no such test, and no way of knowing what's chemically wrong, so for depression which probably has a whole host of causes, all we can do is try different drugs until we find one that works for a particular patient. For now, the medical tricorder remains unfortunately in the realm of science fiction.