Posted 7/19/2016 9:36 PM (GMT 0)
Hi everyone,
I am replying to this post from 2011 because it is so close to my own (terrible) story. I wonder if anyone else has had similar experiences more recently? I would really appreciate it if you could reach out to me. I’d really like to “do something” about the “badness” of this kind of situation. What happened to bdpal575 and what happened to me … Man. I can only speak for myself and my own experience, of course, but I’ll tell you that the “badness” of “what happened to me” was so severe that it changed “me” forever. I’m a “doer”, and I feel that I have to “do” something about it. Of course I’d like to think that this is so that it won’t happen to other people, but I fear it’s more out of a fulminating reach for vindication or revenge. I’d like to try to get a group of people together who have had similar experiences and compile our stories (…thinking along the “strength in numbers” lines). Thanks. I hope I’ll hear from some of you …
My long, terrible story in a tiny nutshell …
I was diagnosed in the US with Crohn’s in 2005, and then I moved overseas in 2007. Having lost my insurance, I decided to take care of myself as best I could “naturally” (using the logic that people have been suffering from gastroenterological problems for ages, but medicines have only come into play recently...). So I ate well – and an awful lot, since I had/have diarrhea all the time – and almost totally naturally: everything “fresh” and “real”, fresh veg from the market, fresh meat from the producers, fresh dairy from the dairy guy … a lifestyle much easier to achieve in the places I was living than it is in the US or UK. For the most part, this approached worked really well. I had fewer problems than before, and, when they did pop up, they usually went away quickly enough. For as bad as Crohn’s disease can be (and was for me when it first came on in 2005), I really didn’t have it bad at all.
In 2013, though, I went through about 8 months of constant, terrible, crippling pain, and I was probably having between 10 and 20 diarrheas a day. I finally went to the hospital (in the UK, where I was living at the time) to get checked out. There they gave me an infection, which led to a worse infection, which led to cardiac arrest, and … you get the idea. Things went downhill. Having never done a colonoscopy and not believing me when I told them of my history of Crohn’s, they accused me of having anorexia. (“There is no other way that your weight could be so low”). Now, to be absolutely clear: I have never not-eaten, I have never vomited, I have never gone and exercised for ten hours straights … etc. I don’t think I’m fat. I don’t even have a scale. Etc. Etc. Bottom line: I’m not anorexic. That just pissed me off.
Anyway, evidently once a person is accused of anorexia, she can be sent to what I will call an anorexic prison, and that is what they did to me. As a sort of “a priori punishment”, they tube fed me for five months. I begged them to stop. You can’t imagine the pain. (This is the same method they use to force feed prisoners in, e.g., Guantanamo.) When I continued to lose weight – I lost 20 pounds while in the hospital/prison, which of course they blamed on me “since you’re anorexic”, though I don’t know how I could have made myself have diarrhea all day long – they punished me more by increasing the speed of the feeding tube. That, of course, was more painful and caused even more extraordinary diarrhea and … It was Hell. I don’t know what else I can say.
During the entire time I was there – Imprisoned, Watched, Belittled, I would describe it as “Un-Personed”, that’s the best language I’ve come up with – they never observed any anorexic behaviors or thoughts or etc. etc. (I explicitly asked them this many times, which they understood as confrontational, and which they punished with more punishing treatment.) Finally I escaped. That’s unbelievable, but it’s real: I escaped from the hospital-prison, went directly to the airport, and got on the first plane out of Britain before they could alert anyone. (Yes, it’s not believable. I’m aware of that.)
I have read some other stories about people with Crohn’s being misdiagnosed as anorexic. Most of them are older, though. Are there any others out there with recent stories of misdiagnosis? Have you “done” anything about it? I just can’t get over “what happened to me”. To be locked up. To be Watched, with a capital W: you roll over in the middle of the night, and there are eyes – the monitors-guards-torturers – Watching you … to have high-speed liquid shot down your esophagus in exact same way that is used in other contexts as torture … Well, I can’t get over it.
The bottom line is that I have to “do” something about it. I’m looking into options. None of the paths toward “redress” seem easy, and all seem impossibilized by the absurdity of this story. (Again, I realize it is absurd, surreal implausible, un-credible; there’s no way around it.)
Have any of you been similarly misdiagnosed with anorexia / an eating disorder and treated / mistreated as such? Can you tell me about your experience? Has it … “affected” … you? It’s affected me, I can say that. I would say that – at least if I’m to extrapolate from my own experience – once Un-Personed, “you can never go back again”, you can never reclaim your full self. There’s something the abusers took from me that I can’t get back.
Have any of you figured out any way to “redress” the badness that happened to you as a result of misdiagnosis?
I have to “do something”. There are two levels of “badness” that I’d like to address: The first is that people with real, physical problems can get accused of anorexia / an eating disorder (and maybe some other psychological disorders, too?), and suffer the real, terrible consequences of that accusation. The second is that, regardless of what has caused people to be underweight, whether it is physical in origin (as in Crohn’s) or psychological (as in anorexia), what I “witnessed” is that treatment of such people is absolutely and unquestionably inhumane. It’s true that (most of) the people in these anorexic prisons are not-eating and vomiting and such things. But – for crying out loud – they’re people. To treat them like animals (fois gras ducks?) or as political prisoners (hunger strikers in Northern Ireland of the 1980s, the Soviet dissidents of the 1970s, the suffragettes of the early 20th Century...) is brutal, terrible, evil (and perhaps all the more so considering that the same treatment of animals and prisoners is widely protested while that of anorexics is sanctioned by the state).
So, there two problems here that I want to tackle: (1) facile misdiagnosis of eating disorders (in the face of Crohn’s or anything else); and (2) even in real cases of eating disorders, the brutal, inhuman “treatment”-punishments that are hidden from the public eye and sanctioned by policy and law.
Anyway, again, “that’s my experience”. I’d be really grateful to hear from anyone who has been through something similar.
Thanks.