How do others cope with family members who believe CFS is Malingering

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I find it realy hard to explain what being tired all the time is like.  I know I have some really severe illnesses and I don't like to tell family members everything but I get the feeling from them they think I am merely a bum for shutting myself in and staying in bed more than not.  I told my older brother

about CFS/ME and he googled come counter explanations that say it is a mental problem.  Does anyone else have problems with loved ones thinking we are either crazy or just plain lazy? 

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  • Posted

    Hello Frank, I know just what this is like.  In the last year I have really been trying to sort this out for myself.  Personally I have come to the conclusion that self belief is the key.  Basically what I've accepted after 35 years with this illness is that I cannot change other peoples' behaviour but I can change my own.  I've discovered that by expecting to be treated with respect and understanding people sometimes respond to me differently from before.  Some don't however and it's then that I need masses of positivity and compassion from myself and others I can rely on in order to have the self confidence to really believe that their opinions and unsupportive behaviours are truly their problem and not mine.  It helps me also to remind myself that these people are probably doing the bests they can with their limited experience.  Not that being made to feel useless and inadequate by others is a good thing!  But again and again I am finding that self belief makes it more bearable but also obvious, in a non-confrontational way - and who with a condition like ours has the energy for confrontation? - that this behaviour is not good and is so much less than we deserve.  I got a lot of support for this when I started with this forum and others like it.  My advice is concentrate on the people and things which do support you and really believe that you deserve teo be supported and understood.  Good luck!
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  • Posted

    thank you MO-I  pretty much do what you are saying.  We are what we think and not what others think of us but it can be lonely at times.  My Lord 35 years is far too long to suffer this way and I have to admire your ability to stay positive.  Because I am finally convinced that I am not crazy I am all the more determied to challenge my physicians to explore this awful disease rather tan dismiss it.  I spoke with a Mrs Head the president of an alliance for ME/chs in California and she told me there is much research needed and some taking place in Maryland and in the United States there are many persons trying to educate new and senior doctors that this disease merits recognition ohter than mental defect or malingering.
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  • Posted

    Contact a ME organsation and get some material to show them, I garanti that it will not be about ME being a mental problem.

    Also try common sense: how many people choose to diminish their lives to such an extent???? Would they?? ME people are typically previously over-active and over- acheivers who agonize over their lost lives! Some never stop..

    Ultimately, unless it is people you actually live with, you can be forced to let go of contact. It is extremly hard, but few of us can afford the energy that such attitudes cost us. And to be honest, if they do not know you better than that, or they are incapable to get it, what do your really loose?

    ME does mean taking a lot of difficult decisions, unfortunately.

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    • Posted

      well thats just it then.  I am a musician and the show must go on so they see my stage presence and then they see me laid up for days.  You can't just dis own people because they don't understand.  When we read about a celebrity even a minor one such as myself people assume the worst-drugs-or eccentricity.  I can't easily explain to a 7 year old granddaughter I just don't feel well and don't want to take her shopping or to Chuckie Cheese, can I?  More often than not I can but I heard her ask mommie whats wrong with grandpa and she will say-we don't know or something like that.  So I'll call my daughter to the side and say-hey', this is real-besides cancer I just am so tired-then I get:  well you could do a four hour session last nite.

      I don't think people can understand if you shove a thousand articles under their noses.  Some people have to see blood and guts before they understand. I suppose if we had a big growth on our foreheads -something obvious they would understand.  I blame this squarely on the Media.  I posted a link to smebody just a few minutes ago that said as many as 500000 die from CFS/ME related illness every year.  But CFS/ME doesn't get the attention of the bird flu-the swine flu, Saars or any other disease-does it?  Maybe because we are too damn sick to go marching down the streets or we don't go into a doctors office armed with the literature to teach the arrogant doctors that the illness is not fake.  I'm 67 years old.  I don't need anything from the goverment and I certainly do not enjoy lying in the fetal position for hours and days on end  then go to a doctor to be told it is all in my head-our heads are attached to our bodies, after all, arent they.

       

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    • Posted

      Dear Frank. Your situation with having to work and then being laid up is well known, mostly people have little or no social life and, as you say, it is even more difficult for others to understand what is going on. Yet, there are those who manage to if not understand, at least accept  it. Much depends on how the relationships were beforehand and how well we ourselves understand and accept that we ARE in fact ill, in the midst of all this confusion that surrounds ME. To me that was the first hurdle, that I kept feeling myself that I was skiving off, even later, in the face of solid evidence, I sometimes feel that this is all my fault..

      Some people on this and others lists have in fact been forced to cut off relationships with family. I know of one who had to stop seeing her mother, who kept on harrassing her about her inabilty to work. Every person's situation is different, every solution is different.

      As for children, I find that they are somtimes rather more sensible than grown ups. Some can well understand that grandpa has an illness that makes him tired. Maybe you could explain about the little things in your body called mitochondria that makes your energy and that yours are sick and cannot make a lot of energy? And you have to use most of what they can make for work, and they you have to lie down and recharge?

      Yes, most doctors are think have proven themselves cowards in this case. It is not proven, and it some countries as the one I originally come from whish is Denmark there is a doctor's junta who sit there and decide that this is not an illness and they'll make sure that any doctor who diagnoses anyone with ME with have committed career suicide.

      I have also, via an insider contact, heard about hospital meetings where they sit and decide that the phsychiatrists get the ME clients.

      In England there is a lot of that too, and some psychiatrists who argue the most have their own clinics to refer people too.

      There is a lot (insert strong expression here) going on here, no doubt about that, and sometimes it seems impossible to live with!! However, slowly but surely the organisations who are working hard on our behafls are turning the tide. I see it in Denmark, Sweden, Noway and to some extent here in the UK. There is simply too much research going on for the sceptics and the slow public organs to keep ignoring, and all of this research is getting results.

      It is agonizing when your own family is incapable of understanding. Mine did not either, though they were more confused than anything else I think that was because I myself was, for so long. Now that I get it, they get it. Took me about 5 of the almost 20 years I have had this illness, had to get through denial, anger, desparation, grief, and all the rest first..

      I do not know how long you have had it for, but if not long, my guess is it will get easier in some ways. There is a lot of anger, but in the end you may have to let that go as others have because it is too costly in energy and gets us nothing. If people are too stupid to get it, that is something we must live with, also the incredible idiocy of some doctors - ok, a lot of them. We ourselves cannot change things on our own. We can support an organisation to work for us, help if we can, follow the research for hope - real hope, mind! - and other than that, save energy for having worth to live lives. Or so I see it.

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  • Posted

    PS: Fron several researchers we have had a promise of a clinical marker to diagnose this illness. The Australians say they will be ready in a couple of years with a sure and cheap test.

    Let us hope!

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    • Posted

      that wopuld be nice to have Tidsel.  I'm wondering if the doctors I see would pay atention to evidence coming from Austrailia.  Because I'm in the entertainment business and had hepatitis C I  always get the question am I a drug user.  I tell them only the drugs they give me then explain I had several blood transfusions in the late 60s and have to watch their eyes roll.  I carried around documents proving this but that made they eyes ever roll even more.  I had one doctor dismiss me with a me thinkest thou dost protest too much!  Arrogance?  you bet.  
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    • Posted

      Oh yeah, I think many of us have been thorugh similar experiences. But there are those who know about this, I do not know if it would be possible for you to find one where you are, who might help with the worst symptoms?

      I do not know your situation but I think I should tell you that I made my ME worse by stubbornly keeping on studying, this can happen. If any choice at all, do be careful..

      Research is happening in Scotland, Belgium, Australia, England, US and many other places that I cannot remember right now, and there are conferances where they compare results. I know the US usually go their own way, but even so, sooner or later it will come together, there really is no doubt about that.

      Meanwhile we have to cope, with our stupid families and even more stupid doctors as best we can. Maybe trying to find less stupid ones. (Well, a few do get lucky that way). Or maybe by sorting out and finding out whose opinion really matters, sometimes starting with ourselves, as in my case.

      Whatever your choices, I wish you luck and do come back and vent here, that is one function this site has :-) And sometimes it helps.

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    • Posted

      thank you so very much my friend.  I felt all of your words and I do appreciate them.  I think I shall take a long rest soon.  I don't know how long I have been ill.  10 years at least but half of the 1st year I was getting treatment and they said the side effects would leave a few weeks after treatment.  The progression was slow at first.  I had more good days than bad ones.  That has flipped and now the bad days are more often and can stretch into a week or more.

      I was supposed to go to Arkansas for my granddaughters birthday tuesday but I decided to rest instead and your post made me feel less guilty about it.  Regards, Frank

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