Doctor Uncle Doesn't Believe in CFS/FM

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, May 12, 2008.

  1. TeaBisqit

    TeaBisqit Member

    My uncle, the doctor, has refused to believe in this illness for over twenty years. And he just left me a message on my voice mail. I didn't call him back tonight because I'm already sad enough from my day. But I will probably return the call later in the week. I just want to cry when I think about having the same conversation with him again. All I get told is that I'm either faking the disease, mentally ill, need a shrink, and I should shut up and go to work like everyone else. Regardless of the fact I've been on SS for this disease for seventeen years. There is no convincing him the disease is real and I'm really badly disabled by it. I just don't know what to say anymore. Anyone else have a stubborn, unbelieving relative? What's worse is this is a doctor. He's a hematologist, but he does sometimes do GP. And he is very fond of pushing all kinds of pills on everyone. I'm just so tired of trying to make him believe and he just refuses.
  2. momof27

    momof27 New Member

    [This Message was Edited on 05/12/2008]
  3. Janalynn

    Janalynn New Member

    I'm sorry that you're having to deal with this! I can't say I can relate, because I can't. I realize how fortunate I am because so far (I'm sure I'll run into someone soon) I've only had support - especially from my family.
    At this point, I would ask - is it worth the time, effort and frustration to even try to make your uncle understand?
    It sounds like you've already had "the" conversation several times with no luck.

    I might say he might be someone you may have to accept may never change his way of thinking. Not until something hits him - but I'm not sure when that will happen.
    All I would say at this point is what you've said here - that you are sad, that you don't know what to say or do to make him think any differently - that you are hurt - period.
    How often are you around your Uncle? Is he close to you - in your life?
    Your illness may be something that cannot be discussed - like politics and religion with some - if you want to maintain a relationship with him.
    I wish I had better advice for you.
    My instinct is to say to let him go - but he's family and I'm not sure how realistic that is - I don't know how close you are to him. There are too many variables that I don't know.

    Sometimes saying nothing says a lot.
  4. Rafiki

    Rafiki New Member

    Please forgive what is sure to be an overlong reply. I don't have the wherewithal to write something short right now.

    I'm really sorry that you are saddled with disbelieving uncle. The fact that he happens to be a doctor is really over the top in terms of major bad luck!

    But, just because he is your uncle and just because he is a doctor doesn't mean you have to ever have this discussion with him again.

    You will not convince him. He's a lost cause and he's obviously wrong. Many doctors are made very uncomfortable by being wrong. They so often must make very important, sometimes life and death, decisions based on their ability to be decisive. You will not change his mind and his belief will not change your body.

    He cannot be allowed to badger you simply because of his beliefs. If he believed that gnomes in your garden were making you ill, would you tolerate his pushing those beliefs on you? You'd probably feel quite comfortable saying I'm just not going to talk about this with you.

    I would suggest that you tell your delusional uncle that this is a topic you are no longer willing to discuss with him, ever.

    These are your boundaries and you are entitled to keep them. I would inform him of my refusal to discuss it any more in writing (via email probably) in order to avoid yet another lecture. My tone would be in keeping with our overall relationship. If you generally get along well with him, use a firm but warm tone. If he's a pain in the beehind about almost everything, just lay it out there.

    He can only tell you something if you are willing to listen. He can't tell you if you hang up the phone, leave the room or push him out of the car while rounding a sharp bend :~)

    If he holds a lot of sway with other families members you may need to create the same boundaries with every family member who agrees with him. Doesn't mean you can't talk to your family -- just not about your illness.

    For me, I rarely talk about my illness because I simply don't want to know what some people really think. If there is any doubt in my mind, and there sometimes is, I don't talk about it.

    I can tell you right now, I won't be talking to your uncle!

    Boundaries are wonderful things and everyone is entitled to them. If this seems a reasonable course of action for you, I wish you courage and compassion as you set the boundaries that will rid everyone's life of unnecessary discord.

    Or, take him for a nice drive on a winding road :~)


    [This Message was Edited on 05/12/2008]
  5. Rafiki

    Rafiki New Member

    were posting at the same time.

    And, basically, the same thoughts.

    Good luck!
  6. Catseye

    Catseye Member

    Well, that's pretty pathetic. It just goes to show you, the older you get, the more cemented in your neurons are and new ideas don't have a chance.

    If you feel like doing battle, you can always print out some stuff by Myhill or Cheney, which explains what's happening. I can list some really good articles that explain everything.

    The real problem is that digestion is bad and has given way to nutritional deficiencies on a grand scale. This is a very condensed way of putting it. Doctors are not taught about nutrients and metabolites in school and so they certainly aren't taught what can happen when you are gradually robbed of them. Your body is broken because it is slowly using up all its reserves of nutrients and metabolites.

    Doctors also aren't familiar with a digestive system that is not functioning. They say with proper diet, you can't be depleted of nutrition. But you certainly can when the body can't break down, absorb and assimilate the nutrients properly. It's so fundamentally simple when you've arrived at this conclusion, like I have, but trying to convince others of it is hard.

    I've tried to talk to doctors about it, but they can't fathom how if you eat something, it won't get digested properly. It's like they don't even know how digestion works.

    Your uncle is just a drug salesman, nothing more. He wouldn't know how to fix a chronic disease to save his own life. Several things in your body are broken: your liver is not working right, your receptors are damaged, your mitochondria are starved for fuel, your body can't get enough nutrition to make the thousands of internal chemicals it needs to function, etc. If you had a broken leg, your uncle wouldn't tell you to see a shrink.

    Start reading about supplements and fix yourself up. That's about the only think you can do for yourself. If your uncle has lots of money and you may be in the will, continue to be cordial. Otherwise, I know what I'd tell him. At least when he gets older and starts complaining about his own health, you can tell him he should see a shrink. He is a perfect example of how even doctors can be brainwashed into thinking that only drugs are treatments for disease and that nutritional deficiencies just can't happen. If they can believe it, you can see how the general public can be accepting is as truth, too.

    good luck


    you could also ask him about coq10, if he even knows what it is, it's a very important coenzyme that the body makes for energy and other things. And that if your body was not making enough of it how you could get really messed up. Production of many things declines with age that people know about, like growth hormone (we have stopped growing, haven't we?) so it's not like it's farfetched to think the we have declined in production of many substances. And if he doesn't know what coq10 is, ask him how he can be so ignorant about how the body functions after being in the medical field for so long.
    [This Message was Edited on 05/13/2008]
  7. Rosiebud

    Rosiebud New Member

    teabisqit but if he was my uncle I'd have nothing to do with him - he's toxic, he doesnt care what he's saying to you.

    Refuse to take his calls or tell him your health is no longer up for discussion - he sounds like a total bully.

    [This Message was Edited on 05/13/2008]
  8. sascha

    sascha Member

    there's an article right now in 'The Economist' about the existence of CFIDS- it describes bio-markers found in people with CFIDS.

    you can find the article (could print it out and show your uncle) two ways:

    do search on my username (sascha) and click article a few items down- "check out this magazine article"- someone put the entire article in that thread.

    or you can go to, then click the science/technology section and find the article on cfids.

    also you could point out to your doctor/uncle that many diseases were thought to be figments in people's imaginations before their causes and the physiology behind them were discovered- like MS, and others. (sorry, my brain can't come up with others right now)

    anyway, i know first-hand how maddening and insulting it is when people don't believe we're ill. i've gotten a certain amount of that. your uncle should do some research and he could easily verify there is a lot of information out there on cfids/fm. what a pain to deal with- so sorry- best, sascha
  9. lurkernomore

    lurkernomore New Member

    Were also thought to be "faker's diseases," at one time too. Epileptics were thought to be either demon posessed or insane because they had *fits* and were usually intitutionalized.

    Now this was a long, long time ago, but how many people must have suffered and died due to the ignorance and close mindedness of those who were not willing to simply trust that a person was ill, even though testing for said diseases were non-existent at this time.

    Your uncle is a doctor. If you should decide to communicate your thoughts with him, I think I would be tempted to remind him of the treatment these people suffered, due to judgemental people and lack of education and diagnostic testing. I wish you the best of luck. This treatment you have been out through has gone on for long enough. I hope you can find it within yourself to draw the lines and tell them "enough is enough and I am done with you now."
  10. deserella

    deserella Member

    That is so sad and frustrating! I went to go visit my best friend last month and she told me I blame everything on my health, pills, I needed to get over,ect... I told her that if she is ever going to bring up my health in an insulting manner like that than I can't be around her toxicity when getting better and healing is my number #1 priority. My doctor even advised me that if there is someone not supporting me than I'm going to have to cut the ties if they are refusing to understand. So now it's been a month and my friend has not called to apologize and I don't think she will. It's been very sad but I don't need that negative energy in my life right now.

    Best of luck with dealing with stubborn difficult people. I'm sorry you have to go through this.
  11. Bluebottle

    Bluebottle New Member

    Myalgic encephalomyelitis has been classified as a neurological illness of viral origin by the World health organisation since 1969. Your country has signed to abide by these classifications.

    I feel sorry for your uncle's patients.

    The Economist article is here:
    [This Message was Edited on 05/13/2008]
  12. sleepyinlalaland

    sleepyinlalaland New Member

    I think it's just about the only article I've read that lends the CREDIBILITY (of source) that hard-heads might possibly be open to.

    No guarantees of course. But it's the one I'VE saved for possible use to disbelievers in the future.

    Personally, I am one of those who never mentions the subject to anyone, which really limits my socializing. The effort one would have to spend defending is just too much and rarely worth it.

    But I think if you have a family member(s) who is really pestering YOU, it may be worth this one last advise he read the article in the ECONOMIST.

    I'm sorry your family has treated you this way. This is a devastatingly lonely condition.
  13. meditationlotus

    meditationlotus New Member

    I can relate so much to what you say. I have given my heart to others who were suffering, and now that I am sick, they ignore me.

    What I am doing is continuing to discuss my illness even if it makes them uncomfortable. I know it is real. If they can't handle it, tough. Also, for those who have been abusive, I basically avoid all communication with them.

    It seems that when we are ill, the resentfullness that others may have towards us, comes to the surface. We become targets.

    You uncle is stubborn. I think I would simply not return his call.

    I refuse to be a doormat any longer. It is his problem, not yours.
  14. Junegal

    Junegal New Member

    I agree with the person who says they feel sorry for your uncle's patients. Really.

    I wouldn't bother to print out any articles or try to educate him. If he is that close-minded it is not worth your time or energy. Some people just aren't worth it.

    I'd limit contact and make sure not to discuss your illness with him at all. Also not worth the stress.

    My mother tells everyone I am not really sick and I am making it up too so I know the pain to have family members turn against you. Half of my family stopped talking to me and makes rude remarks to my face when they see me (about me being sick) and I am ready to just cut ties entirely with everyon. There is a terrible part of me that hopes that the people who do this to me come down this CFS (mean, mean, I KNOW) so they can see for themselves that this is illness is NOT a joke.

    I'm sorry you are going through this. Please know you are not alone. (((Hugs)))
  15. Juloo

    Juloo Member

    I read Janalynn's reply, and I have to say that I agree.

    The main question you should be asking yourself is why you are using so much precious energy attempting to change his mind. If he has held this opinion for 17 years, you are beating your head against a brick wall. You KNOW what is going on with your body. What do you gain by continuing to attempt to educate him?

    It seems to me that there is something in his belief system that is threatened by your situation.

    If there is no other reason to communicate with your uncle, then please try to let this go. If you need to have contact him for other reasons, then refuse to engage on this topic.

    It will take some practice, but you can try. If you can enlist the help of a friend or two to 'debrief' you so that you can unload your frustration with encounters, then you can start saving your energy for your own life.

    P.S. I once heard (and I can't remember where) that it is always hardest to forgive those whom we have hurt. What that means in this situation is that it is possible that your uncle may be refusing to listen to a part of himself that knows you aren't lying -- and he's resisting all the way and making you pay the price for his stubborness. I really do think that withdrawing from contact is healthier for you in the long run.[This Message was Edited on 05/13/2008]
  16. TeaBisqit

    TeaBisqit Member

    I didn't call him back yet, but I'm kind of gearing up to. The reason I'm not breaking contact yet is, in one way, because of the rotten treatment from this family, I want to hear about it when they start to go down. I live for it. I want justice. So that's one reason. The other is, I just don't know if I should cut all ties. I have no one. And it's scary. If I can't have validation, I want justice. If I'm lucky enough to get validation for this disease, then I will torture them nonstop about how they owe me massive apologies. If I can't have that, then I want justice. I want them to go down and I want to know about it. I can't help it. I have the same vendetta streak in me that my grandfather and my mother had. And these people don't deserve to breathe.

    I don't know how people can be compassionless, cold, cruel, and evil. But they are out there.

    I will post after I do call him back. Probably by Friday. Anytime they leave me a message, it takes me awhile to gear up to talk to them. I swear I deserve a medal for still being able to carry on a civil conversation with any of them. It's getting harder and harder to do.
  17. hi all,

    the doctor should believe in M.E./CFS/FIBRO because he,s got the bug in him too.he just doesnt know it yet,or hasnt yet shown signs in his body.EVERYONE AND THING,has it in them.

    maybe things that live deep in the oceans,havent got it.but we cant live there.and i wouldnt want to go give my bug to the ocean lifeform,thus make it ill.

    every living thing has the bug in in the later stages of this bug desease,the suffocating part of it.

    but i have a repreave, since i found pumpkin seeds.

    and i feel so blessed just now.

    cran juice is a godsend to me too.

    and personal hygene when opening bowels and bladder,also coughing up clear jelly stuff from lungs.


    im not having anymore pets when my dog dies.i think he,s bringing something in,off the garden,that lives in bird poo,or indeed any things, poo.

    kind regards

    [This Message was Edited on 05/14/2008]
  18. tansy

    tansy New Member

    Hi Teabisquit

    You've had great advice on creating boundaries; many of us find this works best when constructive dialogue is not an option; we have to ration our energy expenditure so best to use it on activities that are worthwhile.

    When individuals display dogma it's rare that any discussions, or even legitimate information, will change their beliefs.

    Following a UK based medical journal's article on CFS feedback was published on their website. A GP commented upon how bad most doctors were at reading their journals etc critically; if they did so you, and others, would not be in this position now.

    As someone who has a good number of medical professionals in their family I get both first and third party accounts of current trends in medicine, personal opinions, what's frustrates and what excites them + + +. Doctors are no different than any other profession: there's the good, the bad, and the downright ugly.

    My relatives' discussions reflect the usual lack of concensus over just about everything to do with medicine.

    Ironically it was a haematologist who first diagnosed me, and two other haematologists have since confirmed my Dx with blood tests over a period of many years. All three provided me with statements detailing their findings insisting that they prove I am genuinely ill and it's not all in my head. These doctorts would not make a diagnosis unless there was supporting evidence.

    By now you probably won't be surprised to learn that those who believe ME and CFS are psychosomatic illnesses refuse to acknowledge these findings in patients; that's exactly what the psychobabblers in the UK did.

    tc, Tansy
  19. TeaBisqit

    TeaBisqit Member

    It took me this long to finally make the call. He wasn't as bad as he usually is, but he still sucked. He asked me stupid questions like, "Do you go out to the movies?". And I was like, the sound and light sensitivity are so bad that I cannot do that. He really wasn't that interested in our illness whatsoever. I think he just wanted to get family gossip. I still threw in some stuff about the disease. I'm hoping that if God forbid he gets a CFIDS/FM patient that maybe what I've said will have sunk into his head enough so that he treats that person with a bit of respect. I tried anyway.

    It's amazing the misconceptions people have about us. Like he kept saying I needed to do social things and get out there and meet people. And I was like, don't you think if I was well enough, I'd be doing that? And it's not like I have nothing to do with people. I had a friend over last weekend and we do go out once in awhile. I don't always stay in, if I'm feeling up to going out. I did tell him that most of the time, I'm in too much pain, I'm too lightheaded, and the sound and light sensitivity are too severe for me to do much. Maybe some of that sunk in, I don't know.

    Honestly, I just wish the relatives would never call and leave me be because the stress of them makes me much, much worse. But I just don't want to entirely burn the bridges just yet.

    Anyway, let's hope some of what I told him sunk in and if he does get a random CFIDS/FM patient, maybe he'll think twice before being nasty to them.
  20. jasminetee

    jasminetee Member

    I think about you and I know you're situation is extremely difficult. I admire you for being able to still calmly talk to your uncle and other relatives and continue to try to educate them about CFS. I know you have had so much to deal with with your mother passing and your rude and willfully ignorant relatives if I may be so bold to say so.

    I can imagine what a difficult decision it must be to decide whether to keep them in your life or to cut them off. I guess you always have time to cut them off but you know too, there are ways you could limit your exposure to them maybe. Like screening your calls and not always answering or calling them back.

    Personally, I would try setting boundaries with them. I'd let them know as others have said here, that certain topics or ways of speaking to you are not allowed. You might try that next instead of going to a full cut off. You never have to tell them you cut them off either if you want to. You can just stop talking to them much or at all. Like just have less and less to do with them but don't actually confront them or anything.

    As others have also said, this DD is very lonely. I pray that things turn around for you soon, you are due for some good stuff to happen. :)