My friend is ill with a condition that might be psychosomatic. She doesn't believe or trust her doctors, and she is continually diagnosing herself with new illnesses. What's the best way I can be supportive?
posted by anonymous to human relations (22 answers total) 2 users marked this as a favorite
Background: 'Sarah' and I were at university together in the early 2000s. We were in different social groups, but were friends all the same and have stayed friends since.
In the final year of our degree, Sarah came down with an enigmatic and worrying illness that puzzled her and her doctors alike. It prevented her from studying, put a stop to most of the hobbies she loved, and hurt her social life, which was very distressing to Sarah as a busy and outgoing person and a keen student. Me and her other friends helped out where we could, and everyone hoped that Sarah would feel better soon - but as days turned to weeks turned to months, it became clear that a quick recovery wasn't on the cards for her.
Sarah has been ill ever since. Sometimes her illness has improved to a point where she's been able to do some things she wants to do (she was able to return to university to complete her degree a few years ago); at other times, it's so bad she's housebound for months. Doctors tested her for pretty much everything, and when all the tests came back negative, eventually diagnosed with her with a condition which has no known physical cause and which most doctors believe is wholly or partly psychological in nature. (Not in the sense that patients are making it up - although there are some unsympathetic doctors out there who believe that - but rather in the sense that mind/body interaction is a weird thing we don't understand very well, and the mind can cause or exacerbate very real symptoms in the body.)
Sarah accepts the diagnosis, although she believes the condition is physical and the cause has yet to be found. And maybe she's right, who knows. What troubles me isn't that she disagrees with her doctors on this particular issue - what troubles me is the way she's been dealing with it since.
Sarah has now gone through literally dozens of doctors, ditching anyone who disagrees with her about her condition at all in any way. Most of her medical advice these days comes from internet support forums about the condition; if doctors disagree with the opinion of these forums, the doctors are wrong, and offensive and insulting to boot, because "they're saying I'm making it up." I totally agree that she should ditch doctors who think she's making it up - she is clearly ill, whatever the cause of the illness, and is certainly not faking her symptoms - but most of these doctors don't seem to have said that at all, and have rather been ditched for saying things like "being under a lot of stress is going to make these symptoms worse". (Because if it's related to stress, it's psychological, and if it's psychological then it's not real.) Several doctors have suggested CBT, as the only treatment for this condition that has been proven to result in decent improvements among a lot of patients; but Sarah dismisses them, too, because CBT means psychological and psychological means imaginary.
Sarah also frequently diagnoses herself with other conditions, usually rare and/or controversial conditions (multiple chemical sensitivity, etc.). If her doctors disagree with her diagnosis, she sees this as proof that doctors know less about the conditions than do internet support forums, and ditches the doctor. If the internet support forums disagree with her - which they have, on occasion - she yells at everyone and closes her account, then grumbles on Facebook about how ignorant they were.
Sarah also frequently cuts off avenues of assistance when she does not agree with the people providing them. For example: a while back, her doctor at the time referred her to a physiotherapist who could provide and give advice on assistive walking devices - wheelchair, frame, stick, etc. Sarah was happy with this. At the first meeting, which I was there for, Sarah explained that she was unable to walk even a few steps without supporting herself. Shortly afterwards, though, without even thinking about it, she got up and paced across the room while trying to remember something, carrying a walking stick the physio had given her to hold (but without it touching the ground, or even close to the ground). The physio said, hey, look, you just walked by yourself! This is great news, it means you're improving a bit, we can look at ways to increase your mobility and strengthen your muscles. Sarah was hugely insulted and refused to see the physio again, because what's the point in seeing a physio that doesn't believe you.
More recently, Sarah has even started denying aspects of her own history. Although several years ago she talked in terms of relapses and temporary improvements (she was housebound for a while, then felt better enough to re-enrol at university to finish her degree, for example), she is now adamant that her condition has never shown any temporary improvement and has only ever worsened, and that I am misremembering. I find this troubling and bizarre - I would never tell her how she is or isn't feeling, but why claim that things didn't actually happen?
I am not massively close to Sarah these days; we talk maybe once every month or so. But Sarah has been gradually and systematically cutting herself off from a lot of her former friends over issues to do with her illness. She is a very black-and-white person, and anyone she does not perceive as 100% on her side is not her friend. I am one of the few friends left in her life who isn't part of an internet support group, and I'm increasingly aware of that.
I appreciate there's a limited amount I can do here. I can't wave a magic wand and make her suddenly better; I can't change her mind about things she does not want to change her mind about. But she is my friend, and she is suffering, and I do want to support her.
I'm just not sure what it would be more supportive to do in this situation. Do I agree with her on everything, when quite possibly the only thing that would help her is if she changed her approach to some things? Or do I suggest she change her approach to some things, and run the very likely risk of being yet another friend she's cut off and won't listen to? Both seem totally counterproductive, but I can't think of an alternative.