Is there anything I can do to help my ill friend?
August 22, 2012 3:34 PM   Subscribe

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?

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.
posted by anonymous to Human Relations (22 answers total) 3 users marked this as a favorite
Do you only have a relationship where all you talk about is her illness? Maybe shifting the focus away from her illness would be more supportive than ruminating on it. You sound like you have devoled into a theraputic relationship, rather than a friendship.
posted by saucysault at 3:49 PM on August 22, 2012 [9 favorites]

You say you talk with her maybe once a month or so. In that situation I would expect that your conversations are partly about her life/illness and partly about your life. As for her illness or symptoms, I would say "I'm sorry you're not feeling well" and leave it at that. You're not in her day-to-day life, and you're not an expert on her illness, so you don't need to have an opinion on the subject to generically support her.

Whether she's physically ill, mentally ill, both, or neither, it sounds like it's all-encompassing to her and you don't need to get sucked into it to support her. Talk about other things so that she can take her mind off her troubles (and presumably also be a friend to you), and wish her well.
posted by headnsouth at 3:54 PM on August 22, 2012

Your friend is going to continue to do the only thing she knows to do until she stops. Maybe that will mean a diagnosis she likes, or maybe it will mean one she doesn't like, or maybe it will mean no diagnosis. But until she's run through every possibility herself, she's not going to accept any help getting there.

Offer her sympathy. Listen to her pain. You don't need to promise anything in order to simply be with someone when they're sharing. Set aside your opinion on her matters and just empathize with the emotions involved. You don't need to call doctors names or say anything you don't believe. Just let her know that what she's going through is tough.
posted by Gilbert at 4:04 PM on August 22, 2012 [1 favorite]

As someone who has a (presumably different) life-limiting chronic illness, may I say with all respect that I don't want or need my friends' advice or assessments or judgements on whether I am choosing the right treatment modalities?

"That must be tough for you" and "I am sorry you had that experience" and "Is there anything I can do to help?" are always useful. "You should really try X," and "My doctor says Y," and "I read an article that says Z" are pretty much never useful. ("My mother-in-law had this experience with A," or "When I took B, I had these results" are sometimes useful, depending on context and relevance.)

I get that you did research on your friend's medical issue because you wanted to be a supportive friend. I get that your friend talks about her perspective on her issues at great length. But I think, based on what you say here at least, that you are mistaking her wish to vent about her treatment experiences as a wish to have a discussion about her illness and treatment experiences that includes your knowledge and perspectives. (Or perhaps it is just frustrating for you to see her choosing not to do things that you think might help, and let me assure you I SO get that if that's the case, because that is a tendency of mine as well!)

The bottom line is that your advice and information is almost certainly not wanted. Even if it seems like she's structuring a conversation in ways that invite it.

So. "That must be tough for you," and "Is there anything I can do to help?" and that kind of feedback are the best way for you to be a supportive friend. "I read an article that suggests the best treatment for your issue is X," is not, even when it's offered with the most helpful intentions in the world. I promise you that Sarah has read the same article.
posted by Sidhedevil at 4:06 PM on August 22, 2012 [6 favorites]

I'm sorry, but you aren't a doctor. Being supportive is being supportive.
posted by discopolo at 4:11 PM on August 22, 2012

"You know, [person], I'm actually calling because I was thinking about you the other day, specifically about the struggles you've had with your illness, and how difficult it has been for you to deal with it. There was a time that I clearly remember the symptoms were less intense, and yet I also remember you more recently saying that you can't remember the symptoms ever getting less intense. There was a time that you felt your doctors were trying to help you, but more recently I'm getting the impression your doctors are being really unhelpful. I'm always concerned for your health well-being, but suddenly I found myself thinking that perhaps doctors seem to assume your issues are mental rather than physical is because you might have been struggling with this for so long that you've started to become depressed. Maybe they're seeing psycological issues because they're seeing symptoms of that depression, and it is getting in the way of their ability to see your real physical issues. So I know it's none of my business, and you can tell me to fuck off if you want, I'll still be your friend, but I care about you so I wanted to ask: have you considered seeing a therapist to see if you might be depressed?"
posted by davejay at 4:24 PM on August 22, 2012 [1 favorite]

that assumes you're close, of course. if you're not, then yeah, don't engage on it.
posted by davejay at 4:24 PM on August 22, 2012

I am afraid I don't have great advice for you, but I was in almost the exact same situation with a friend. I too went to the doctor with her and heard her reject any suggestion that her problems could be solved (for example, her doctor suggested that her knee pain might be bursitis, but she refused diagnostic injections and instead pursued Rolfing and prolotherapy). Our friendship did not start out being focused on her health issues, but eventually, it was all she could talk about. I believe my friend had/has some version of a factitious disorder, although I don't know if she was being consciously manipulative. We're no longer friends. I didn't want to play the role she cast me in, and she didn't want to talk about anything but her symptoms.
posted by Wordwoman at 4:31 PM on August 22, 2012 [1 favorite]

Don't try to problem-solve. You sound like me -- if I hear someone's struggling with something, my first reaction is "Oh dude lemme help fix that!" and then in a case like this that turns into "Aha! If I can convince you that you're not really sick then your problem will be gone!" And that's.... not the sort of thing that a lot of people want to hear.

I think there's a social divide over this stuff, FWIW. Some people perceive that sort of lemme-solve-your-problems behavior as kind and supportive, they see it as proof that you care and you're taking their problems seriously. And so if for instance you grew up around that sort of people, it's easy to slip into problem-solving as your default behavior when someone complains, because hey, kind and supportive, what's not to like? But other people feel like it's actually sort of rude and dismissive and take it almost as proof that you're not taking their problems seriously. Like "Gee, I wanted you to sympathize about this, and all you can say is 'Have you tried XYZ?' Like you think I'm the sort of idiot who wouldn't try XYZ? This is a serious problem I've been struggling with for a long time, of course I've tried XYZ, you ignorant fuckbag!" And then they feel all minimized and not-listened-to and not-cared-about and you feel like your kindness has been unfairly rejected nobody's happy.

But it sounds like your friend doesn't want you to help her solve this particular problem. So... just DON'T. You're not required to. You're allowed to say "Oh man that sounds awful" and leave it at that. That's actually what half of the world does when they hear about a problem, so you wouldn't even be alone in doing it.

And if you give up on trying to solve her problems for her and discover that that leaves you with nothing to talk about -- then yeah, saucysalt has it, you were always really more of a therapist than a friend, so just let it go.
posted by nebulawindphone at 5:13 PM on August 22, 2012 [2 favorites]

I was nearly 36 when I was finally given a better diagnosis than crazy. I had been treated like a lazy hypochondriac my entire life. I have a genetic disorder. I had to nearly die to finally get the right test. The good news: The right diagnosis empowered me to get dramatically healthier. The bad news: I still get treated like I am crazy, though the suggestion these days is Munchausen (i.e. Drama queen with a sick need for attention making up tall tales about how sick I once was) rather than hypochondria.

Internet friends and internet support groups helped me get well when doctors not only could not but would not even try. Some groups are better than others. Some groups have reputable members with serious credentials. Perhaps you could be supportive of the idea she needs to be more discerning rather than just dismiss this as quackery? (Which is what it sounds like you see it as).

Also, she might genuinely be remembering the past differently. When I was very, very ill, I insisted my husband was like 5'7" tall instead of 5'8" tall. I was sure I was right. We had been together a long time. He looked at me and bitterly said "You don't know me at all. I have X years of military records documenting my height." and walked off in disgust. It was extremely hurtful to me and really dismissive. He could have more kindly chalked it up to fever, medication, whatever, which was more likely the truth. So I would suggest that you try to be understanding and view this as possibly due to her deteriorating physical health. It might help to state that you remember it differently but do so in a way which does not dismiss her version of events. Allow for the possibility that with age/time, perhaps you don't remember everything perfectly but also try to suggest this might be a new symptom.

Best of luck. I wish I could be of more assistance.
posted by Michele in California at 5:53 PM on August 22, 2012 [2 favorites]

I am definitely not trying to diagnose your friend over the internet. But you asked how you can be supportive and I had a thought while reading your story that might be helpful.

Have you ever heard of Borderline Personality Disorder? This problem may or may not apply to your friend. I only notice a few of the traits necessary for a diagnosis in your description. But regardless of whether or not your friend actually has Borderline Personality Disorder, you might gain some insight from doing a little research on how people deal with other people who have BPD, and try some of those techniques when you deal with your friend.

From the NIH website:
"According to the DSM, Fourth Edition, Text Revision (DSM-IV-TR), to be diagnosed with borderline personality disorder, a person must show an enduring pattern of behavior that includes at least five of the following symptoms:
* Extreme reactions—including panic, depression, rage, or frantic actions—to abandonment, whether real or perceived
* A pattern of intense and stormy relationships with family, friends, and loved ones, often veering from extreme closeness and love (idealization) to extreme dislike or anger (devaluation)
* Distorted and unstable self-image or sense of self, which can result in sudden changes in feelings, opinions, values, or plans and goals for the future (such as school or career choices)
* Impulsive and often dangerous behaviors, such as spending sprees, unsafe sex, substance abuse, reckless driving, and binge eating
* Recurring suicidal behaviors or threats or self-harming behavior, such as cutting
* Intense and highly changeable moods, with each episode lasting from a few hours to a few days
* Chronic feelings of emptiness and/or boredom
* Inappropriate, intense anger or problems controlling anger
* Having stress-related paranoid thoughts or severe dissociative symptoms, such as feeling cut off from oneself, observing oneself from outside the body, or losing touch with reality.

Seemingly mundane events may trigger symptoms. For example, people with borderline personality disorder may feel angry and distressed over minor separations—such as vacations, business trips, or sudden changes of plans—from people to whom they feel close. "

The black and white behavior you describe is the main thing that made me think "borderline". It is called "splitting" and the techniques to deal with splitting specifically might help you in considering how to address your current situation i.e. "should I agree with her, or disagree with her?

This is kind of lengthy, but here is a cut and paste of the relevant tips (more aimed towards people with a family member or spouse who is borderline, I think):

What NOT to do:

* Don't argue with a person who is splitting or try to talk sense into them. That's a recipe for a Circular Conversation.
* Don't blame yourself. People with personality disorders can easily distort the facts in their mind to fit the way they feel. That's their concern, not yours.
* Don't act like the Thought Police. Don't use any tricks, intimidation or ultimatums to try to get someone to see things differently. Everyone is entitled to think what they want to think and believe what they want to believe.
* Don't become angry with them or try to retaliate.
* Don't yield your own reality about a person or group or isolate yourself from healthy friendships, family, social groups just to "keep the peace". Don't try to hide those relationships. It's OK for you to have differences of opinion.
* Don't automatically assume that everything the other person believes or says is untrue. Don't automatically run for the opposite corner or play "devil's advocate". Try to think objectively. Occasionally, like the boy who cried wolf, they may tell you something important.

What TO do:

* Handle disagreements with a person who is splitting as unemotionally, firmly and briefly as you can.
* Try to "agree to disagree". Acknowledge that you see things differently.
* Respect their right to have their own point of view and assert your own right to have your own point of view.
* Avoid ideological debates. Try to see the gray in each situation and judge on the merits.
* Maintain and nurture your healthy friendships, family relationships and social groups, so long as they form no substantive threat to yourself or to another individual.
* Find a support network, a group of people who understand what you are living with and who you can talk to about the tough situations.
* Find validating environments for yourself away from the influence and control of a dissociative individual.
* If appropriate, talk to people who have been split black or white by your loved one to let them know that you are able to see the "gray".
posted by treehorn+bunny at 7:24 PM on August 22, 2012 [3 favorites]

I was nearly 36 when I was finally given a better diagnosis than crazy. I had been treated like a lazy hypochondriac my entire life. I have a genetic disorder. I had to nearly die to finally get the right test. The good news: The right diagnosis empowered me to get dramatically healthier. The bad news: I still get treated like I am crazy, though the suggestion these days is Munchausen (i.e. Drama queen with a sick need for attention making up tall tales about how sick I once was) rather than hypochondria.

I have two friends who have had the same experience as this, though theirs weren't genetic disorders- one resolved into lupus and other MS. Be kind to your friend and just be supportive, even if she seems inconsistent. She's getting enough static from the establishment. You don't have to take it on as your job, too.
posted by small_ruminant at 8:57 PM on August 22, 2012 [1 favorite]

As someone with fibromyalgia (quite possibly the illness you are describing, if it isn't cfs) I can tell you that I don't need my friends to point out solutions they've read or heard about. I just need them to be emotionally understanding and able to accept the changes and differences in me and to VALIDATE it. It is very frustrating to know that you are in genuine pain and not have it validated by others, including members of the medical community. It sounds like yes, she may be over reacting to suggestions that there is a psychological component to this, but that may be because she does feel so discounted for what is a very physical and real experience of debilitating and frustrating pain. In my experience, yes CBT helps, yes yoga helps, yes keeping stress down and exercising helps, but I have taken the initiative on my own to try to use these tools. If and when someone suggests them or other solutions they've heard about to me it is hard not to feel that they think I am somehow not trying hard enough to just get over it.

That said, if that is all she wants to dwell on and talk about and she doesn't seem to be trying to take an active role in her recovery and if you don't like her friendship anymore, then don't be her friend anymore. I had to get some distance from someone recently who refused to take an active role in coping with his illness and just dwelt on it incessantly and it became a frustrating bore. Dwelling is one thing. Wanting to openly share what one's new reality is and have it accepted by friends is another.
posted by Jandoe at 11:43 PM on August 22, 2012 [6 favorites]

As someone currently going through "they can't find anything wrong" but something is wrong merry-go-round, I suspect your friend does have something wrong, isn't getting the help she needs from doctors, so is turning to alternative sources of information. I'll admit, the webMD trap is a tempting one. And I don't necessarily mean webMD, but searching for the answer on various websites and forums. Let me explain why, and it might help explain why your friend is doing it.

1 - Doctors are really great at finding the standard stuff. If it's not standard, or if it's early in the stage of a disease, especially uncommon or without laboratory findings, doctors may not find anything for years. If you read people tales on the web, this happens OVER AND OVER. Person has symptoms, gets brushed off as crazy or with some condition like fibromyalgia, or eating disorder, or obesity, getting old, etc . . . Then, years later sometimes decades later, the actual cause is found. (And somes it's too late.) I just read a blog of a woman who after being treated for fatigue, pain and unexplained weight loss, abruptly stopped posting after being diagnosed with anorexia and sent to a rehab clinic. I looked her up since she was using her real name, and two years later, she died of a brain tumor. Yes, the doctors told her she had anorexia when she really had cancer.

2 - A lot of the symptoms of some pretty major illnesses are the same. Fatigue, foggy thinking, pain, sleep disturbances. Dry Skin. Dry hair. etc. etc.. Some of these symptoms are also symptoms of aging or stress. So looking at a list of symptoms for x disease, you might be able to check 2/3's of them off, and think you have that disease, nevermind that so many other illnesses have those symptoms in common because they're just a reaction to being ill.

3 - Many doctors are not familiar with current research, especially on less common diseases. And many doctors use the same thinking they had when they were in school, so new information just misses them. Conversely, they also know that one research paper does not make a breakthrough in diagnosis and treatment. So even getting your information from a peer reviewed journal, either doctors might not be familiar with it, or it might really not be tested enough to be correct. But it makes the doctors seem out of touch.

4 - Frustrated with doctors, many people turn to the internet to do their own searching. And here is were it gets interesting. Sometimes they're right. Sometimes, because they have much more motivation than their doctor to find a cause, they do. Not saying anything bad about doctors, but you are most motivated by you, and being sick, you can spend a lot of time looking at pages upon pages of information and sometimes that does lead to an answer.

5 - You read about both the cases where someone is diagnosed YEARS after they started having symptoms or the stories of people that find the answers and start to think that you know more than the doctors or at least are better read, and maybe you can find the answer too. After all, you have 2/3rds the symptoms for said disease.

6 - Doctors start playing hot potato with you because they just don't have an answer. So they recommend x specialist, who doesn't find anything. Perhaps that doctor recommends somebody. Or maybe they find something, but don't understand the cause, so they refer you to someone else again, and that doctor doesn't have an answer either.

7 - You just want an answer so you can start coming up with a plan to get better. This is especially "dangerous" because it leads you down the path of any answer, even the wrong answer, is better than not knowing. So now that you don't think the doctors know anything because of 1, 3, 4, 5, and 6, but the person on the forum is saying exactly what you want to hear and it SOUNDS like it should be right. Maybe there is even a kernel, maybe even more of truth to it. Incidentally, I think this is why people turn to alternative/homeopathic medicine. Because it's much better to hear radio frequencies from electronic devices are causing all your ills rather than just not knowing what the cause is.

8 - when they do finally diagnosis you with an illness, it's a waste basket diagnosis that is given when they can't find anything else wrong. It's a diagnosis of exclusion, except you know not everything has been tested. Plus, having read everything you can on the internet about the condition, you know a lot of people are initially diagnosed with that, and then later the actual cause is found. And you also know that sometimes your test results are "off", they're just not "clinically significant" according to the doctors. So you still think something is wrong and that the doctor is just passing the buck. Now you're not trusting doctors at all anymore, but you keep hoping that you'll stumble on to Dr. House and he'll finally find the cause.

As I have searched for answers to my own health issues, I've seen all of the above and experienced some of it myself. Sometimes I'm on the brink of giving into to all the self-diagnoses, and sometimes it's easy to get into a adversarial relationship with doctors, because they're not helping. They're supposed to be the last line of defense to your health, and they're not making you better.

I do think this type of illness-and-no-answer has a negative effect on ones psychological state and in turn behavior. You start to think you have disease x because some of the symptoms match. Then you wonder if maybe some of the other symptoms match but you've just not been paying attention because its not so bad. (Why yes, I *do* have dry hair) and accidentally start exaggerating that symptom, even if it might be unrelated or perhaps non-existant. Or when you talk to the doctor, you're only remembering to tell them symptoms in light of what illness you think you have that day. Not on purpose, but because that's what you're thinking about. Or you have self-doubt even knowing that what you're feeling is real because no one else can corroborate what you feel.

It's sort of an accidental or self-gas lighting. I think that's why doctors now are less likely to tell a patient it's all in their head than they are to treat whatever is wrong as a serious illness. The problem is that many people see through some of the diagnoses they give (chronic fatigue syndrome, fibromyalgia, ME, etc . . .), and while some cases are legit, many more are the doctors not knowing what is wrong. On top of that, even though doctors don't want to say it's all in your head, some think it very loudly.

So how to support your friend? Well, one, stop thinking its psychosomatic. Maybe it is. But it's probably not. There are too god damn ways to get sick that confound doctors but end up being bonafide illnesses. And if it is, the only thing you doubting her will do is make your interactions worse. Next, as someone else said before me , don't offer her advice, especially things like "have you tried (extremely simple over the counter treatment)" because chances are she has, and it's so far beyond that suggestion that it's insulting. Next, take what she says at face value. If it does turn out to be all in her head, well, again, you aren't going to be able to change that. She probably is getting bad advice from the forums, but they're giving her something that she desperately needs; support. It sounds like many other people in her life are not there to give her support anymore, but the people online to. But really the only thing that is going to get her away from that is finding a doctor who takes what she is going through seriously and isn't dismissive of what theories she has. Which is going to be a tall order; considering that chances are the information she is getting is at least partially wrong.

I would suggest one thing if you think she'd be open to listening to you. Suggest a therapist, but not to treat her condition, but to help her understand and learn to live with it. Chances are the therapist will kill two birds with one stone. Even if not though, dealing with a chronic illness is a difficult road to walk, especially an illness without answers. A therapist might help her recognize that it's okay not to have an answer and that may lead to her to be less reliant on information that is probably somewhat sketchy.
posted by [insert clever name here] at 11:51 PM on August 22, 2012 [11 favorites]

Mod note: From the OP:
Thank you all for the answers.

To clarify, I haven't (and wouldn't) suggested any treatments or diagnoses to her. I've stuck to the 'that sounds awful', 'I'm so sorry you had to deal with that,' etc. school of reply. What I'm asking is really whether this is the best way to be supportive. If she's saying "that doctor told me stress could exacerbate my symptoms, I can't believe she thinks this is all in my head!" or "Some people have improvements but my illness has only ever got worse - no you're remembering wrong, it's never improved even a bit," is it more helpful to say "wow, that sucks" or "hon, I don't think that's what the doctor was saying in this case/that's what it felt like to you in 2008 when you went back to university, remember?"
posted by taz (staff) at 12:37 AM on August 23, 2012

Mysterious, protracted illnesses are a unique experience.

Like your friend, I was drawn into the world of Multiple Chemical Sensitivities (back in '04 when it was Environmental Illness). I found a lot of relief from my symptoms when I removed all of the "bad" things that were described, including a handful of triggers that were keeping me bedridden. By diving head-first into the world of crazy, conspiracy-ridden bad science, I was able to cope with my illness.

Do I really think that I had a secret illness that no one will admit exists? Not now, but at the time the evidence was compelling.

Did the Internet help me despite being a load of woo? Yes.

Did the doctors help relieve my suffering? No.

Trusting doctors is an ingrained cultural belief, but it does not take a lot of suffering and dismissals to have that belief shaken. I have never regained a real trust of doctors and I often have an adversarial relationship with them. It takes a lot of effort for me, now as a healthy person, to step away from my initial reactions and consider their opinions objectively.

Your friend is on a long, hard road to acceptance. Mistrust, denial and quackery are a part of that journey. You can choose to continue to support her or you can cut contact.

(On preview, OP, I would challenge your friend on those points. "Stress is a physiological response that affects every major system in your body. Are YOU saying it's all in your head?" or "Recalling the exact severity of your illness from a decade ago must be hard. Have you kept a journal or a log to track it? Oh, so how can you be sure?" It is possible for her to be her best advocate for treatment, but it sounds like she is being obstructionist.)
posted by Vysharra at 1:12 AM on August 23, 2012 [1 favorite]

It is not helpful to challenge her perspective directly. Here's why: if this is an illness with a specific physiological cause yet undiagnosed, your intervention will be irrelevant. If this is a factitious disorder, your intervention will be ineffective. If this is a psychosomatic disorder, your intervention will be not only irrelevant and ineffective, but potentially stressful, which could add to the somatic burden.

So you will not help her by challenging her. But it is incredibly frustrating to hear friends rewriting history, and you're totally in the right to stand up for your truth to the extent you feel comfortable with.
posted by Sidhedevil at 7:27 AM on August 23, 2012

It sucks that your friend is suffering but it sounds like an unspoken condition of her friendship is that she never be second-guessed or contradicted or even asked any questions that don't fit her existing narrative.

So, to answer your question:

I've stuck to the 'that sounds awful', 'I'm so sorry you had to deal with that,' etc. school of reply. What I'm asking is really whether this is the best way to be supportive. If she's saying "that doctor told me stress could exacerbate my symptoms, I can't believe she thinks this is all in my head!" or "Some people have improvements but my illness has only ever got worse - no you're remembering wrong, it's never improved even a bit," is it more helpful to say "wow, that sucks" or "hon, I don't think that's what the doctor was saying in this case/that's what it felt like to you in 2008 when you went back to university, remember?"

What you're doing right now is probably the best thing that can be done in your situation. Her mind is pretty firmly made up about is and if you do anything other than agreeing with her, it sounds like she'll move you over to the "against" column and that will be that. It's never a fun time to basically give up on a friend but please don't let guilt stop you from seeing when the moment arrives when you have done all you can to help and it's honestly okay to just kind of walk away from it all before you start getting dragged down.

If you're okay with just sort of nodding and saying, "Yes, that sounds awful," etc, then go ahead. Otherwise her lines are drawn rather clearly here. What was the diagnosis she was given, if you don't mind saying?
posted by FAMOUS MONSTER at 9:23 AM on August 23, 2012 [1 favorite]

I think it is important to remember that the human memory is falible. If it fits into her current narrative, she may only be remembering the bad things about that time and how she struggled. Conversely, if you're convinced she's making it up, you may only be remembering the good things you saw. Chances are, the truth is somewhere in between.

I also have to wonder if the times that you observed her feeling better her perspective wasn't different. She wasn't pushing herself more and dumping off other factors that would burden her from being able to do the things you were observing. Again, coming back to myself because it might help with perspective: When I first started getting really bad, I was working like a fiend and putting in a lot of extra hours because I was trying to keep up with what used to be my normal pace. But to most outside observers, I was a workaholic putting in extra hours at night and on weekends. Especially since I've always been a bit of a workaholic, so this just seemed like I picked up the pace. In reality, I needed the extra time to accomplish what I would normally accomplish in much less time.

Meanwhile my home was falling apart because I exhausted all my energy on trying to keep up at work. Only a handful of friends at the time understood what I was going through, because I was loath to talk about how badly I was feeling and how much it was affecting me. And even then, I didn't fill them in on all the details because I was frankly embarrassed I wasn't able to take care of myself, my home. I saw it as a personal flaw. I was also, to a certain point, in denial too. No one likes to admit they're not as good as they used to be. Complex problems that I had previously found easy were suddenly a struggle and I didn't want to admit to even myself I was getting dumber.

And, as Sidhedevil says, it's not going to help to challenge her anyway, even if she is wrong. She believes it to be true. Perhaps trying to understand what she thinks happened, such as 'Hey, in 2008, you managed to get your degree, you must have really struggled to juggle both your illness and school, I don't know I could mange that!' Invite her to tell you about that time period from her perspective. I think its okay to say that you didn't realize how poorly she was fairing because she seemed better to you, as long as you're not accusing her of changing history. And it might give her an opportunity to explain her perspective, while thinking through what it was like in a context where she doesn't feel the need to defend herself.

One thing you may want to read up on is invisible illnesses. Abandonment and criticism from friends that don't believe anything is wrong because they can't see what the person is experiencing. It's not like a broken leg, where there is an obvious "thing" that outsiders can observe. This might get you started:

Also, many of these chronic illnesses come with a certain amount of cognitive impairment. She may have trouble thinking some of her actions through rationally, and may struggle to even explain them. One common illness, Fibromyalgia is accompanied by "fibrofog", which is haziness and slow thinking. People with hypothyroidism complain of impaired mental cognition as well. I believe many of the other chronic conditions do as well.
posted by [insert clever name here] at 9:33 AM on August 23, 2012

It's fine to challenge her if you feel like you just can't deal with what you see as her misrepresentations and self-limiting obstinacy anymore.

But don't think it's going to be helpful to her. It might be helpful to you if you are sick of the friendship, and that's okay.
posted by Sidhedevil at 9:34 AM on August 23, 2012 [2 favorites]

It seems to me that one of the difficulties here is that your friend dismisses all psychological problems as "fake."

A therapist can help reduce a person reduce her stress levels. That doesn't mean the illness itself is fake, but simply that stress can exacerbate many illnesses, from heart conditions to GERD. So it's good insurance to have a therapist. Furthermore, a therapist can help your friend plan her interactions with doctors. "No, it's not psychological. I already have a therapist, and she's diagnosed me with A and B, but not Z like you're saying." A therapist can help your friend figure out what questions to ask doctors, how many times to see a doctor before giving him the bird, how to talk to doctors without coming across as combative, and also, importantly, how to cope with the stress of having a severe, undiagnosed medical condition.

I don't know if your friend would listen to that sort of talk -- basically, saying you're not suggesting her illness is anything but a hundred percent real, BUT a therapist would be helpful anyway because of the reasons outlined above. If you think she would not be receptive to that kind of conversation, don't have it and do stick to, "I'm so sorry you're going through all this." Your friend may just need to figure this one out on her own.

I also suggest you stay away from internet/armchair diagnoses of serious conditions like BPD. Doctors get that one wrong. Some of the strategies for handling black and white thinking are good strategies regardless of whether the person you're talking to has BPD, but it's hugely massively terribly irresponsible to armchair-diagnose with a condition as stigmatized and blamey as BPD.
posted by brina at 10:06 AM on August 23, 2012

Instead of "wow, that sucks" or "I don't think that is what the doctor was saying", maybe you could draw her out a bit more. Ask how he said it and what specifically he said and why that made her feel he really meant X, etc. It can be done in a supportive fashion that lets her vent but also encourages her to think more deeply. That can be really helpful in getting her to become more rational without you ever telling her she is being irrational.

I think the issue is that she really is irrational and this is being used as an excuse to dismiss concerns, complaints, observations etc wholesale simply because it came from her. I have two sons with learning disabilities. I was the only adult who did not do this kind of thing to my oldest son. Everyone else was dismissive, unaccommodating, and generally asinine. I ended up being the only person he trusted and, when we finally got answers, I was eventually able to help him because I had his trust.

The metaphor we talk about is "the monster under the bed". Most kids get told there simply are no monsters. Apparently, most people are pretty bitter about that. Genuine problems get swept under the rug simply because the child can't effectively communicate or "prove" their issue. This cultural meme, that there really is a monster in spite of the adults being dismissive assholes, shows up over and over in movies. In "Aliens", Newt comments on how adults lie to kids and say there are no monsters. In Jurasic Park 2, the kid tells his parents there is a monster/dinosaur in the backyard. The parents do not believe him and begin arguing, blaming each other, then they discover a t-rex eating their dog. In another Aliens movie, the dismissive father gets killed by the monster (alien) on the window that he said wasn't there.

In contrast to the typical dismissiveness of so many other people, if my son told me something, I checked out his story and tried to understand what the issue was and tried to help him. Metaphorically, if I found no monster, instead of announcing he was wrong, there was no monster, I said "I cannot currently find a monster under your bed. If the monster comes back, here are x, y, and z things you can do to address the issue."

If you are the person who tells her "I cannot currently see your invisible monster but I would like to help you anyway." it will be deeply appreciated. And it will put you in a position of trust and position you to be genuinely helpful should more useful answers ever come to light.
posted by Michele in California at 10:13 AM on August 23, 2012 [1 favorite]

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