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Disability 101: Treatment Suggestions and Why They Are Not a Good Idea

Disability 101: Treatment Suggestions and Why They Are Not a Good Idea

I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!

Many people who do not live with chronic health issues, perhaps in a spirit of wanting to help those they know who are in pain, disabled, chronically ill, or affected by a neurological or mental health condition, may suggest different treatments or ways that they believe the person with the condition, illness or disability should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get…well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD, chronically ill person, person with a mental health condition, or non-neurotypical person, namely:

…that they cannot be trusted to manage their own health, disability/disabilities, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill or still have their condition; the treatments that they have worked so hard to find, additionally,  most likely work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “well being,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of people with mental health conditions, the non-neurotypical, persons with disabilities and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the individual’s humanity. Unless you are a professional, doctor or other specialist working with the person who has one of these conditions, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the individual should be undergoing to yourself.

…that you are frustrated by the individual’s inability to “get better.” You may not say or even think this outright, but in some cases, actions speak louder than words.

…that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the individual many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness, mental health conditions, non-neurotypicality and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the affected person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you–an able-bodied person–feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).

In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, health conditions, mental health conditions, and neurological conditions. For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many non-able people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities, chronic health conditions, non-neurotypicality, or mental health conditions.

An earlier version of this piece was posted at Faces of Fibro on July 6, 2009.


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45 responses to “Disability 101: Treatment Suggestions and Why They Are Not a Good Idea”

  1. K

    SO MUCH WORD on this. I have chronic migraines. I am able to control them with a combination of propanolol (a blood thinner) as a preventative and Relpax for when I have a migraine. Without these medications, I WILL have migraines about 20-25 days per month. With them, I might get one or two.

    I always have acquaintances absolutely irate about the fact that I am on such a “serious” medication, and then they suggest that I might want to give up gluten (wtf?) and tell me that Excedrin migraine works. Nothing makes me want to punch a wall (or “well-meaning” person) more than being told that, basically, I’m just exaggerating the pain I would feel without my prescriptions.

    This is because I might refuse any more than a glass or 2 of wine because the blood thinners lower my tolerance. No one seems to get that I am a grown ass woman who decided, along with her doctor, that the risks of the blood thinner on a person with low blood pressure are worth it if I can have a mostly headache-free life.

  2. slave2tehtink

    Preach it. If I have to hear one more time about how maybe I should get some more exercise, or keep my house cleaner (?!), or take more vitamins and I’d just MAGICALLY not be depressed or anxious anymore, I am tempted to … I don’t know what. Scream, maybe.

    I desperately try to remember that generally these people are kind-hearted and trying to be helpful but sometimes I am just not charitable enough to not want to kick their shins.

  3. sophiefair

    raw food. exercise. acupuncture. yoga. gluten-free diet. seeing my (their) doctor. pilates. acupressure. reiki. chiropractic. the secret. “getting out more”. working. going back to school.

    dudes, if there were a “cure” don’t you think i’d be doing it?! after all, i’m the one living with my chronic pain…

  4. Norah

    Friends and family generally don’t do this with me, either because they understand or because they know me and can sense the stormclouds gathering on their horizon from miles off and aren’t eager to get an earful. I’m not known to be subtle, or kind, or quiet.

    Lots of ‘professionals’ though keep suggesting I do courses/classes for some of the problems I bring up, like I’ve never looked at these before and checked what they were about and if they would be relevant to me. Maybe they also know they’re less likely to be yelled at and called various names by clients, because that would probably be a bad idea unless you want to lose options for any kind of assistance at least in your town/region. Because firmly but POLITELY suggesting I’ve seen them before and already know there’s nothing there for me never seems to deter them.
    .-= Norah´s last blog ..Identification =-.

  5. Rea

    Yes, exactly. Great post. Also, I often feel that people’s suggestions only remind me that they don’t believe I’m really that ill, that if I just pulled myself together and got out more/exercised more/ate better/etc, I’d get out of my ‘funk’. Which is particularly galling when they haven’t bothered to ask whether I do any of those things first. It feels like projection, almost – everyone’s been sad, so everyone must be an expert in how to fight off a depressive phase, because they’re the same. Or, well, not.
    .-= Rea´s last blog ..how i learned to stop worrying and love my depression (sort of) =-.

  6. Caitlin

    I have very rarely made suggestions, but never about medications, and only with a few of my friends who have chronic illnesses and they have told me most (or all) of what they have tried. So sometimes I’ll hear about something and ask them, “Have you heard about X?” But I’d never presume to say “You need to try X.”

    (I have also asked said friends if they mind/would like me to ask/share/whatever stuff I hear about, since we run in slightly different though slightly overlapping online circles, and they have said they don’t mind and always like to hear about new ideas, so I guess that does make it a whole other kind of thing. As I said though, I don’t make suggestions about medications or the like because I’m NOT a doctor and what they’re on is working – it’s only things that don’t require changes in meds or something like that.)

  7. Ms. M

    Great post! I’ve been living with the “have you tried X?” syndrome for 27yrs now. It has been helpful exactly…hmmmm…. oh yeah, ZERO times!

    The underlying emotions I usually get from the person doing the suggesting is first, frustration that I am still not “better”, and that I musn’t want to “get” better since I’m not enthusiastic about trying their suggestion.

    I really appreciate the post breaking down the implications of someone suggesting some “fix”. I hadn’t thought them all through before, usually my predominant feeling is (as someone else said) shin kicking :)

  8. Tori

    My new personal favorite is, “Have you thought about hysterectomy?” in a very casual kind of way, in order to manage adenomyosis and possible other rogue endometrium.

    Um, yes. Every time I ovulate, get PMSy, or start bleeding, I think about performing a DIY hysterectomy with a grapefruit spoon. But it can be relatively major surgery in itself, and it also has the potential to permanently affect some other very big life choices (i.e., the decision whether to have biological children). Plus, it’s not something where I can really go back if I decide I don’t like it.

    So, yes, I’ve thought about it. Seriously. Logically, emotionally, and desperately. It was kind of a difficult decision for me to reach, and I don’t appreciate being pressed to go into the details with everyone who asks that question.
    .-= Tori´s last blog ..The cat would really like to eat dinner now. =-.

  9. sanabituranima

    The worst thing is suggestions that show that the person clearly doesn’t understand what yourcondition is.

    E.g. suggesting you “cure” anxiety problems by goingto a nightclub to relax. Because noise, crowds, flashing lights, strangers and randomers who think they are entitled to feel me up are well known for their relaxing properties.

    Suggesting a serious memry impairment can be “cured” by writing a list. How do I remember what to put on the list? How do I rememer where I put the list? How do I remember to cross things off when they have been done so I don’t do them twice?

    And giving up gluten seems to be a “cure” for just about everything.

  10. Kat

    epic word to this. I have ADHD-I, dysgraphia, and tons of LDs as well as depression and anxiety. My mom has suggested vitamins and supplements for my ADHD. In the past she’s suggest acupuncture and herbs for my depression and anxiety. She then took me to get that stuff done. (and it sucked!!! D:<)

  11. calixti

    So much word. If I get told again to just ‘cheer up,’ ‘get out more,’ or smoke pot, I’ll…

    Well, I don’t know, but it won’t be pretty and will potentially be violent and destructive towards inanimate objects.

  12. Kaitlyn

    I’ve been out for three weeks, and so many e-mails from professors said “get better” in one form or another.

    I’m not going to get better. I might feel better one day, or I might decide that I can’t finish the semester at home and drag myself to class.

    You know who keeps doing this? My mom! You need to walk more. “It hurts to move.” You need to stop letting people order you around, oh by the way, you’re walking every day over the winter break and you’re not laying on the couch during the day.

  13. Puffalo

    I’ve received treatment suggestions that had merit, generally from people who actually know what they’re talking about, but the unhelpful ones are definitely more common. Some of my least favorite include:
    Irrelevant dietary restrictions: “You can cure ADD by cutting down sugar and food coloring!”
    Advice that regularly appears in magazines: “Depressed? You should exercise more!”
    Advice for a condition that’s being managed well already: “I’m taking this great medication! *lists creepy side effects* You should try it too!”

    Thanks, advice givers! That sounds credible/novel/like a great idea! *sarcasm*

  14. Samantha

    When I get someone suggesting a new “cure” or “treatment” for one of my conditions, especially when its from family members I tend to get the message that either:

    1) I’m just being lazy and don’t want to try hard enough to get better.

    2) You complain too much and if you’d just do your part you wouldn’t be such a burden.

    and the worst:

    3) We can not bring ourselves to “accept” your disabilities and thus you as a disabled person. Fortunately your disabilities can be cured so at least you’re not completely lost like those [other] crippled people.

    Also, speaking of: I have a really bad back but I have very weak joints in general. My family has been constantly pressuring me to “just hang from something” and my back would somehow magically feel better. Well, I finally relented and tried it against my better judgement. I think I almost dislocated both shoulders.

  15. Kaitlyn

    Puffalo – food coloring? What?

    *That* is why I avoid the internet when it comes to my medications, symptoms, and diagnoses. My mom’s already looked up the latest tentative diagnosis and said I should. Very curt “No” from me.

    If what she found was credible or “the cure,” surely the doc would have mentioned it. (Changing your diet. Of course. It’s always the diet! (My apologies to those with food allergies/IBS/etc for whom it is the diet – but of course, if you added *this* it would go away, I just know it.))

    My main “advice” for people who are sick is to sit down, dammit, I’ll get whatever you need.

  16. Kaitlyn

    Oh, Samantha, I got number 2 over Thanksgiving and in a discussion with my mom on Tuesday.

    I spent most of the 3 weeks at home on the couch when I was awake. I was comfortable. The recliners just weren’t flat enough.

    Well, my mom asked me, where would family go if I was “hogging” the couch? (Not that she wanted family over for Thanksgiving.)

    So now – well not now, but over winter break – that’s going to change. When I’m “grumpy,” I’m supposed to go to my room. Excuse me, mom, but being isolated from the family makes my depression worse – it’s like you’re shoving me out of sight to avoid thinking about me.

    When I was laid up due to a skin infection, I spent a lot of time in my mom’s room because my cousins were staying with us and one of them is a dude. And I was… “in a state of undress.” He got mad when I wanted to go in the living room, because he had go to his room. So he was mad, I was depressed, and I felt guilty because why can’t Daniel be in the living room? I’m going upstairs. *runs up the stairs crying*

  17. Naamah

    Oh, good lord, yes, wonderful, THANK YOU for writing this. THANK YOU a hundred times. UGH!

    I will add something else to the list of why I hate this:

    When people suggest helpful things I can do, even when I know they mean well and even when they aren’t being blatantly thoughtless about it (not thoughtless would be offering advice that is genuinely good advice . . . that I investigated years ago), I get annoyed.

    The most annoying thing to me is having to explain myself over and over and over. The repetitive nature of it. It’s really frustrating because for every conversation I want to have about aspect G of my condition, I have to then have the conversation FIRST where I discuss why A B and C did not work, why D and E are not recommended for me, and why Doctor F does not actually know what is wrong. To have the conversations I want or need to have, I often have to bring relative strangers up to date on my whole damn health situation.

    There is the option, of course, to say that I don’t wnat to discuss what I have and haven’t tried, or listen to suggestions, but that is not a particularly friendly conversational ploy. After all, from their point of view, they are just trying to be sympathetic/friendly/helpful, and here I am saying “I am not taking advice or handing out details of my medical history at this time, but I totally want you to listen to me anyway.” So if I want to make them stop without alienating them, I have to try to gently educate them about why they need to not do that, which is exhausting.

    I am nonconfrontational, and I often just swallow it back and don’t discuss it rather than trying to herd other people’s cats of misplaced helpfulness.

    So I resent it because other people’s misplaced helpfulness turns conversations about my problems into some sort of deal where I am forced to educate them about myself, my condition, and often manners, too, and then I often have to defend my position, only after which can I proceed to whatever I wanted to talk about. And if I just wanted to talk because I need to blow off steam and need some support? Phase 1: Let’s All Try To Cure Naamah totally eats up the same number of spoons I would gain from Phase 2: Let’s Just Listen To What Naamah Has To Say Because She Probably Has A Better Grasp Of This Shit Than We Do.

  18. lauredhel

    Add me to the chorus. Weight loss diets. Organic. Vegan. Atkins. Exercise. Walking. Swimming. Physiotherapy. Antidepressants. Antibiotics. Vitamins. MInerals. Herbs. Expensive mystery supplements. Reiki. Acupuncture. “Natural” doctors. Dietary exclusions. New analgesia. No analgesia. Positive thinking. Fresh air. And more.

  19. Kali

    While I may sometimes be disappointed with my family’s utter lack of interest in what’s going on with my health, I at least am spared getting this crap from them.

    I get it from friends, though. I can’t tell you how often I’ve been told that surely it must be something in my diet, or perhaps if I went to bed earlier, or I need some probiotics, or I’ve been given antibiotics too many times, or acupuncture would do me a world of good…

    And the worst part is, I can’t afford to alienate people by telling them exactly what I think about their ‘helpful’ suggestions. I moved across the country at almost exactly the same time as my health took a turn for the much worse. I don’t have many friends on this coast, and not many people who’re really trying to stay in touch with me from where I grew up. Though it makes me want to scream, I put the nice face on and say that I’ll talk to my doctor about it. At least then, when I don’t take up the suggestion, I can say ‘My doctor didn’t think it was the best idea’. Which is true – if my doc thought it was that great an idea, he would have suggested it!

    And don’t get me started on people who should know better suggesting stupid things. I have doctors who have pushed over and over for me to swim – nevermind that I have asthma and don’t do well with chlorine, chill easily and severely, and the fact that swimming causes dislocations for me (there are no ‘safe’ strokes, I’ve tried). It makes me want to scream! Especially as they KNOW I see a doctor who does nothing but work on stabilizing and strengthening my joints, who has far better expertise to suggest appropriate exercise. When my doctors start making suggestions about things that are outside of their field even though they know I have a whole stable of specialists, I find myself thinking that they are acting just like any other busybody who wants to advise on things they don’t know much about. (And of course, with them, I have to worry even more about giving offense because it’s hard to replace specialists who are excellent in their field.)

    ~Kali
    http://www.brilliantmindbrokenbody.wordpress.com

  20. Mother of a stutterer

    It often feels like other people want to be the savior, the one who came up with the magic solution we hadn’t considered. So they can feel like they have some special insight. But usually the suggestions imply that I am causing the problem, that I haven’t done my research.

    One mom, who sees my daughter maybe 3 hours a month, asked me what her “role” was in “curing” my daughter’s stuttering. I felt this strange rage when she asked that, because it felt so intrusive and presumptuous. But another friend told me I was over reacting because the woman was just trying to be helpful. But no one else has asked for a “role.”

    My other favorite suggestions:

    “Have you considered that maybe she stutters because you are pressuring her to be perfect?”

    “You need to be more relaxed around her- she picks up on that, you know.”

  21. Kassiane

    (I’m autistic & have rather intractable epilepsy)

    “They have medication for that”
    “I know. I’ve failed most of them and take several. Thanks for your concern”.
    “I saw a dateline special about a diet too.”
    “…uh. That with my meds nearly killed my kidneys.”
    “well, medicine is toxic”
    “…go to hell”

  22. Personal Failure

    Sing it! When somebody does this to me, I hear, “You’re not trying hard enough. Your problems bother me. Stop being mopey and DO something.”

    I especially love “You should find a new doctor, yours doesn’t seem to be doing much.” It took me 15 doctors to find one that believed me and was willing to treat my pain. He’s doing everything that can be done, there just isn’t much to be done. Shut up now.

  23. sundiszno

    Yes, yes, yes to all of this. As invasive as this is, it also sometimes feels to me like a kind of emotional distancing…as in “I could never be in your oh-so-terrible-position because I’d do X, Y, and Z, and that makes me all kinds of better than you.” Grrr!

  24. Frankincensy

    One of the most frustrating aspects of this for me is that people often accuse me of “pushing them away” or “rejecting their advice”, as if that is what I’m doing whenever I fail to jump on the suggestions they make for how I should approach and manage my health conditions. No, it really isn’t. What I’m doing is trying to figure out my limitations and what I can do to help myself, rather than being told these things by others, but somehow that adds up to my being rebellious and unwilling to listen.

    I feel that there can be situations where suggestions are appropriate – but not for everybody, not all the time and not for every aspect of a condition. It is very dependent on the nature of the relationship, the nature of the health condition(s) in question and the way in which suggestions are phrased, as well as other factors I’m probably missing. If I tell a close friend that my anxiety can be triggered by not having eaten enough and she nonjudgementally suggests a way in which I could alter my eating pattern to combat that, I don’t mind that at all. If someone who didn’t know much about my situation gave me unsolicited advice to try self-help book X or alternative therapy Y because it’d totally cure me, that is intrusive and inappropriate and everything said in this post and the comments applies.

    I’m speaking from my own experience in making that clarification, though, and if a person with a disability or chronic health condition would prefer that the people around them didn’t make treatment/management suggestions under any circumstances, it’s their prerogative and those who know them ought to respect that. I realise that what’s OK by me is not going to be OK by everybody else.

  25. thetroubleis

    I agree so much with this post.

    I’ve been the same way my whole life, why the hell do people think I haven’t done any research or tried any of this crap.

    Concentrating harder will not cure dyspraxia. Slowing down will not make it not hurt to write with a pencil.

    Exercising does not cure bipolar disorder. Eating vegan is not going to help my anxiety, not to mention that I have a hard enough time remembering to eat that I can’t add more restrictions to my diet.

    Thinking happy thoughts will not snap me out of a panic attack. Also, I can’t just not pay attention to sounds and sights that bother me. It doesn’t work that way.

  26. Cee

    I can not express how much I appreciate this blog!!! For the first time in a long, long time I don’t feel so alone because most of what is being said sounds so familiar. Thank you!!!

  27. The White Lady

    yes! so much this.

    The one I get most often is ‘maybe you need glasses?’ It really sticks in my craw. Sometime I am actually going to answer with ‘when you invent glasses that reverse brain damage, give me a call’ and walk away.

  28. codeman38

    @The White Lady: Gah, I’ve occasionally gotten similar comments, but regarding hearing aids. Sorry, but my ears work perfectly fine; it’s between the ears and the brain that stuff gets garbled…

  29. kaninchenzero

    It’s gotten to where I won’t even look up my conditions on line any more. (People who know me expect me to be up on the latest research.) I don’t want to know. I don’t care. If there’s some fucking awesome new treatment or test or whatever I expect the medical professionals in my life — who are very well paid for that sort of thing and I am not — to stay on top of it and let me know if it’s relevant. Sure and I’m responsible for making sure I get the best care possible but I’m tired. I don’t want to do it. Why should I have to do that on top of living with it in the first place?

  30. Kaitlyn

    So with you, kaninchenzero! There are so many conflicting things online, and all of your symptoms point to you being dead five days ago.

    I won’t even look up my meds. Since I started using a different pharmacy for some of my medications (walgreens doesn’t carry it yet), I told them when I started a new medication, giving them the names and dosages. They can check for interactions.

    Another thing is commercials for prescription medications. I hate them so much. I have never asked my doctor to put me on the latest advertised wonderdrug. He (yeah, they’re all men) knows my old and ongoing symptoms. He should recommend the medication, not me! (“Ask your doctor about X.” The only good medication commercials are the ones for ED because they’re so cheesy.) Though I do understand the benefit – if you had restless leg syndrome, but never had a name for it, you could describe your symptoms and mention this ad which mentioned this syndrome. I envy those in countries where they can’t air ads for prescription drugs.

  31. Kaitlyn

    Another thing that is tiring?

    The *idea* of changing doctors. As much as I can’t stand Dr. Ego, he is the best in his field. People come from all over the country to see him.

    But we haven’t gotten anywhere, so I better change docs! (We tried that. He said not only would he have referred me to Dr. Ego, but Dr. Ego taught most of the GYNs in the area.)

    My mom periodically tells me I should change doctors – because I’m 21, it’s my responsibility. I’m not changing docs until I move. As long as I’m here, I’ll see Dr. Ego.

  32. Godless Heathen

    @codeman38 Same deal here, I’m tired of explaining it to people. I also get people suggesting I learn to sign and read lips! Certainly, I should undertake the effort of learning a whole new language that they’re never going to speak to me instead of them just slowing down and enunciating occasionally. Or in the case of media content providers, providing closed captioning. Must be all the gluten I’m eating that’s making everyone sound mushy and garbled.

  33. Anji

    Thank you, thank you, THANK YOU. I’m bookmarking this to send to the next person who suggests I try celery leaf juice as a ‘cure for my aches and pains’ (yes, someone really suggested celery leaf juice!).

  34. Astrid

    For blindness, most people don’t try to suggest I get an operation or the like. Those who do, will usually shut up when I fla tout tell them that my eye condition can’t be treated.

    On the other hand, I’ve had many suggestions re my autism. They tend to fall into several categories:
    1. The totally dismissive “suggestions”, like “Just cheer up”, “Get social!”, “Finally try to control yourself”, etc. These tend to come from my parents or sister, who are pretty much in denial of my autism.
    2. Unproven, dangerous “treatments”, like chelation. I get these only form a tiny group of people on the Internet, and usually in the context of cure debates.
    3. Treatments that actually are effective for some autistics, but either didn’t work for me, I can’t access, or my symptoms are not what these treatments are meant for. For example, people say that Risperdal is approved for autistic irritability (true), but I’ve been on that and it didn’t work.

  35. Penny, catastrophe

    Well then, amen AND word!

    I JUST got done sending a snappy email response that I’m going to catch hell for over this exact thing. “Here’s a link to a doctor in your city! You should see them, they’re really great!” Oh thanks! My response (it was from my stepmom): That’s nice, but I don’t have health insurance like the rest of our family does. So I won’t be seeing another doctor again for a good long time. I’m sure this doctor charges money. And I’m just too poor. So I can sit here and be in pain for free. /gotohell.

  36. The White Lady

    @ codeman38 – WORD.

  37. Donna L

    Thanks for this post.

    I’ve had often-severe Crohn’s Disease for more than 30 years now, since I was 22. And I can’t count the number of well-meaning people who’ve told me I should try this or that diet because they read somewhere that it cures Crohn’s Disease. Do those people really think I haven’t already heard over the last 30 years of every possible dietary or other cure? And did it ever occur to them that maybe I’ve figured out for myself by now that diet changes make no difference for me?

    At least people like that aren’t quite as bad as those who confidently tell me that Crohn’s is psychosomatic. All in my head. All I need to do is eliminate stress in my life (as if that were possible anyway, never mind that there’s no real relationship). Or, “I can prove it! You first got sick 2 years after your mother died! Obviously, that was the cause!” I guess they never heard of the post hoc ergo propter hoc fallacy.

    Seriously, I’ve had people say insensitive things to me far more for having a chronic illness than for being transsexual.

  38. JetGirl

    Yes, yes, yes!
    That has happened to me so many times! I’ve had rheumatoid arthritis since I was a child, and I remember vividly one occasion when I was about 9 when a family friend suggested I help her husband with his bee-keeping. There was a rumor going around at the time (and possibly still these days) that bee venom cures arthritis. This woman was setting me up to be stung!
    Luckily, my mother didn’t think it was a good idea, and never went along with it. I would have refused too, but it’s tough to do when you’re a kid and the adults around you control so much of your life.
    Many years later, an acquaintance who also has RA insisted I stop my medicine and go with herbal remedies only. Just because they worked for her didn’t mean I was going to be bullied!
    Thanks for this post!

  39. Janet

    Argh! Yes! This, so much. Thank you. :-)

    I once had to spend ages on the phone with my father, while he demanded that I justify to him why I wasn’t willing to try the Lightning Process for my M.E. It was… not fun.
    .-= Janet´s last blog ..Further to Beautiful Imperfect: Reclaiming “Love” =-.

  40. Jeanne

    Annaham,

    This is an excellent description of what it feels like to have “well-meaning” people make “suggestions” (which sometimes sound more like commands) for trying various treatment options that may well be unsafe.

    It is insulting to patients who invest enormous time and energy into managing their condition(s) to have someone presume they have “the answers” that the patient somehow overlooked or wasn’t resourceful enough to find.

    To be clear, I’m not suggesting that I don’t appreciate when people make suggestions to me because they are sincerely concerned and trying to help.

    I am talking about those with the White Knight complex… who literally get offended if the patient (me) doesn’t enthusiastically “sign right up” for their idea.

    I’ve been chronically ill for 27 years now. I’m 40. It is insulting when people who don’t have a clue of what I have been through try to tell me what they think I should do to “get better” from my numerous chronic illnesses.

    I also have a really serious problem with people who misuse the word “cure”. I am incredibly sick of seeing scammers (especially online) claim they have the “cures” for my incurable illnesses. Where’s the peer-reviewed research to back up their “cure” claims? Non-existent, of course.

    The scammers make me sick the way they prey on the chronically ill. Many times when people “suggest” treatment options to me, they are “suggesting” supplements that are unregulated/questionable. To be clear, I have NOTHING against alternative medicine. I’m even a certified herbalist. It just sickens me when scammers present their creepy products as “natural” or “alternative medicine” because then it gives “alternative medicine” a bad name. (Alternative medicine has helped me a great deal).

    I do not tolerate scammers well. If my mother in law suggests one more supplement to me, I might lose my temper.

    Great post!!!

    Jeanne
    .-= Jeanne´s last blog ..Scam Busters =-.

  41. NTE

    I may just forward this to everybody in my immediate family. It’s just excellent.

  42. Chloe

    Just another post saying, thanks this describes the last 15 or so years of my life!

    Thankfully I’m the healthiest I’ve been for years so i get less of articles on the latest very expensive te=reatment/scam shoved through the letterbox but I still get the odd stupid suggestion.

    You know what works best? figuring out what I know my body can handle and learning to live my life around that.

    I also hate the ‘saint’ syndrome thing, that if you’re ‘ill’ you can’t possibly do anything to make you worse and thus have to live your life like a saint lest you be blamed for being ill. For example if you eat the wrong food, or stay out all night at a party or something you’re watched with evil eyes, you should be inside sipping detox tea doing yoga not having fun! don’t you know that’s soo bad for you? yes it may not be the best idea ever and I may feel crap but sometimes I take that risk to have a bit of fun.

  43. Dogged

    Since my conditions are orthopaedic, people often tell me that ‘physiotherapy’ would cure my limp, straighten my spine, strengthen my muscles, improve my stamina.

    And when they say that, what I hear is, ‘You’re not working hard enough!’

    Because if they thought about it for half a second they’d realise I’m already doing as much physio as I can manage. They’d realise I’ve been doing prescribed exercises for a couple of hours every day since I was a few months old. Physio got me to the point I’m at today.

    But according to them physio should ‘cure’ all these things, so clearly I’m not doing enough of it.

  44. Freya

    The suggestions to change my diet drive me up the WALL. It’s really difficult to go gluten free when carbs, fruit and veges are the only things you can eat with certainty (thanks to various digestive enzyme deficiencies which fluctuate according to my stress levels and physical state). And all the suggestions that I should go on a high meat diet because I struggle to maintain body mass? I can’t digest it without the enzymes, which makes it a slow poison, thankyouverymuch. If it were just a matter of eating mostly meat and lollies I would not be down to 11% body fat even though I eat more than almost anyone I know.


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