I suffer from a connected set of unusual and debilitating conditions that clearly, noone is capable of accurately diagnosing or making sense of. I understand aspects of them—inflammation makes them worse, for example, as do certain parts of my hormonal cycle, it also seems to be related to a genetic difference in how I respond to some nutrients and how my joints operate and a neurodivergence, and these aspects are reliable and helpful—but at the end of the day, noone knows why this is messing up my body so badly. And I mean badly, emergency room badly, randomly nearly dying badly, tanked quality of life for long periods badly. Characteristically, some of my values are terribly off in a way that they know from condition x, except condition x also has y, and I do not have y, while I do have z, which seems utterly unrelated and terrible in and of itself, and is common in condition a, for which I also do not test positive, continue indefinitely. I don’t know if it is an unusual presentation, or an unusual combination, or outright new, but I am no longer expecting to actually get an answer.
I’ve also had your experience of bringing detailed documentation of what has been tested, what I am taking, what triggers symptoms etc. and having that entirely ignored in favour of generic useless advice I tried years ago.
And at some point, when I realised we weren’t getting anywhere, but that some of these potential diagnoses had the same cures, and that the cures, if they would fail to work, would have less atrocious side effects than the current symptoms, and that I wouldn’t need to get the diagnosis to have them work, that them working was the goal in itself and testable, I switched to “fuck it, so let’s try all of these in sequence while carefully monitoring to see which work”. I’d have been delighted to set up double blind placebo trials.
Doctors thought this was a very bad idea, saying they could not prescribe without a diagnosis, even though I was clearly very ill and they saw no way to diagnose what made me so ill because my test results were so weird—I would have one alarming marker meaning one thing, but then not the other they would expect, etc. (And that was the ones that believed me, and were very sorry, but figured there was nothing they could do. There is also a special class of doctor who apparently believes that I can’t have possibly have had a heavy, unabating period for two full months, or spent a month with diarrhoea so badly I dropped 10 kg, or developed pain so crippling it made working or being happy or even getting decent sleep essentially impossible, because the test for whatever they thought would cause this came back negative, so clearly, I just like hanging out in hospitals for no fucking reason, maybe because hanging out with gaslighting idiots is so inherently wonderful.) We got nowhere. Even as I stressed that my quality of life was currently so bad that I was suicidal, so I literally could not see how it could get any worse from trying the wrong pill. It drove me nuts. I started actively avoiding medical care because it was so disheartening to have hope and have it be crushed each time.
I eventually trialed this, myself, through various roundabout ways. (I got a doctor friends to prescribe the trial meds, after showing her very carefully why I thought these would be good to trial, and how I would ensure my safety during the trial. And I went through a long list of potential supplements one can get online.) And a lot of stuff did nothing much in any direction, really. Some made me a little bad. Some made me briefly really bad, but was dropped and contained without further consequence. But some, and I say this with a relief I can barely express, some helped. Some helped, a lot.
I’m now on a pharmaceutical developed for fibromyalgia. I do not think I have fibro. But it did, massively, reduce my pain levels, so frankly, I do not care.
I’m also on a med I was prescribed years ago, an atypical antidepressant. The doctor involved told me it was forbidden to prescribe for my condition, but he suspected it would really help me, and that it would produce the effects I was seeking without the side effects I was worried about, and wanted to try. It really helped me, incredibly so. I have meanwhile been told that the diagnosis he gave me at the time reflected a medical misunderstanding of several other conditions, that I have a different condition, and that the recommended medication for that is… the one he already gave me, that I am already taking. I still think of that man fondly as a dude who actually helped me.
I am also on ashwagandha, which completely eliminated a severe psychiatric symptom I had, doing something no major medicine could for me. I am certain this is the cause, the correlation is rock solid, and the difference is major. Forgetting this supplement has it return. I have not seen this link documented anywhere. I have no idea why it works. But as long as it does, I do not care. A name for what I have, and understanding for it, would be neat, it really would. But at the end of the day, my goal is to fucking function.
And on 20 other things that make a significant difference, but do not stand out as much as the above.
Beyond pills, I have very, very elaborate documentation of nutrition rules and exercises and habits that help, and guidelines for when it gets bad.
I’m still alive, and getting my PhD, and working at university, and in a long-term relationship, and have savings, and manage to do some activism and have some impact, all in spite of the fact that I think the genes I got were a whole bunch of crap still causing me considerable grief. So I guess it worked, for some degree of “worked”.
But fuck, do I feel your anger. I’ve had to figure out and set this up all on my own, with the medical system for the most part not just failing to help, but making it worse. At this point, I only see doctors to access lab machines, scanning machines and prescriptions, and perceive them as hurdles more than anything else.
I have so much fucking sympathy for this.
I suffer from a connected set of unusual and debilitating conditions that clearly, noone is capable of accurately diagnosing or making sense of. I understand aspects of them—inflammation makes them worse, for example, as do certain parts of my hormonal cycle, it also seems to be related to a genetic difference in how I respond to some nutrients and how my joints operate and a neurodivergence, and these aspects are reliable and helpful—but at the end of the day, noone knows why this is messing up my body so badly. And I mean badly, emergency room badly, randomly nearly dying badly, tanked quality of life for long periods badly. Characteristically, some of my values are terribly off in a way that they know from condition x, except condition x also has y, and I do not have y, while I do have z, which seems utterly unrelated and terrible in and of itself, and is common in condition a, for which I also do not test positive, continue indefinitely. I don’t know if it is an unusual presentation, or an unusual combination, or outright new, but I am no longer expecting to actually get an answer.
I’ve also had your experience of bringing detailed documentation of what has been tested, what I am taking, what triggers symptoms etc. and having that entirely ignored in favour of generic useless advice I tried years ago.
And at some point, when I realised we weren’t getting anywhere, but that some of these potential diagnoses had the same cures, and that the cures, if they would fail to work, would have less atrocious side effects than the current symptoms, and that I wouldn’t need to get the diagnosis to have them work, that them working was the goal in itself and testable, I switched to “fuck it, so let’s try all of these in sequence while carefully monitoring to see which work”. I’d have been delighted to set up double blind placebo trials.
Doctors thought this was a very bad idea, saying they could not prescribe without a diagnosis, even though I was clearly very ill and they saw no way to diagnose what made me so ill because my test results were so weird—I would have one alarming marker meaning one thing, but then not the other they would expect, etc. (And that was the ones that believed me, and were very sorry, but figured there was nothing they could do. There is also a special class of doctor who apparently believes that I can’t have possibly have had a heavy, unabating period for two full months, or spent a month with diarrhoea so badly I dropped 10 kg, or developed pain so crippling it made working or being happy or even getting decent sleep essentially impossible, because the test for whatever they thought would cause this came back negative, so clearly, I just like hanging out in hospitals for no fucking reason, maybe because hanging out with gaslighting idiots is so inherently wonderful.) We got nowhere. Even as I stressed that my quality of life was currently so bad that I was suicidal, so I literally could not see how it could get any worse from trying the wrong pill. It drove me nuts. I started actively avoiding medical care because it was so disheartening to have hope and have it be crushed each time.
I eventually trialed this, myself, through various roundabout ways. (I got a doctor friends to prescribe the trial meds, after showing her very carefully why I thought these would be good to trial, and how I would ensure my safety during the trial. And I went through a long list of potential supplements one can get online.) And a lot of stuff did nothing much in any direction, really. Some made me a little bad. Some made me briefly really bad, but was dropped and contained without further consequence. But some, and I say this with a relief I can barely express, some helped. Some helped, a lot.
I’m now on a pharmaceutical developed for fibromyalgia. I do not think I have fibro. But it did, massively, reduce my pain levels, so frankly, I do not care.
I’m also on a med I was prescribed years ago, an atypical antidepressant. The doctor involved told me it was forbidden to prescribe for my condition, but he suspected it would really help me, and that it would produce the effects I was seeking without the side effects I was worried about, and wanted to try. It really helped me, incredibly so. I have meanwhile been told that the diagnosis he gave me at the time reflected a medical misunderstanding of several other conditions, that I have a different condition, and that the recommended medication for that is… the one he already gave me, that I am already taking. I still think of that man fondly as a dude who actually helped me.
I am also on ashwagandha, which completely eliminated a severe psychiatric symptom I had, doing something no major medicine could for me. I am certain this is the cause, the correlation is rock solid, and the difference is major. Forgetting this supplement has it return. I have not seen this link documented anywhere. I have no idea why it works. But as long as it does, I do not care. A name for what I have, and understanding for it, would be neat, it really would. But at the end of the day, my goal is to fucking function.
And on 20 other things that make a significant difference, but do not stand out as much as the above.
Beyond pills, I have very, very elaborate documentation of nutrition rules and exercises and habits that help, and guidelines for when it gets bad.
I’m still alive, and getting my PhD, and working at university, and in a long-term relationship, and have savings, and manage to do some activism and have some impact, all in spite of the fact that I think the genes I got were a whole bunch of crap still causing me considerable grief. So I guess it worked, for some degree of “worked”.
But fuck, do I feel your anger. I’ve had to figure out and set this up all on my own, with the medical system for the most part not just failing to help, but making it worse. At this point, I only see doctors to access lab machines, scanning machines and prescriptions, and perceive them as hurdles more than anything else.