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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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shocked by what hubby and counselor said at my vist and sad : ( any advice?

Discussion in 'General Symptoms' started by hurtingallthetimet, Apr 15, 2012.

  1. hurtingallthetimet

    hurtingallthetimet Senior Member

    me and hubby go to conselour appointment together and its been for years ive seen the conselour she has helped my whole family alot..

    but i was shocked, sad, hurt and angry at last visit....she wanted to focus solely on my health and when she asked why i ddint get out of house, take a class i enjoy etc. i told her i wanted to, i had done those things before but i just couldnt because of the pain and exhaustion before, during and after, she then said i was wanting to be a victim, that if i wanted to do those things i could and that i was depressed...(which i am depressed take medications) ..i told her {the first illness that i could think of to compare these illness to} that it would be no different than someone with lupus who have similiar or same problems that they couldnt do those things either...and she said that no its not the same as lupus they physcially cant because of their illness

    she has told me to do something i use to love, i have went to a few garage sales, wiped out later with crash of i told her i am trying...i had wanted to get a table and paint it my favorite color i looked in newspaper for people seeling to get cheap...and hubby all of sudden loud vocied said that if i start the project it would be like EVERY project i start hed end up doing it..hed have to drive to get it...i was shocked because when i told him about wanting the table he said, he had no problem with it hed borrow frineds truck..then he says that to the counselour

    sorry so long i just needed to do the peopel who have NO ONE to help do it? please tell me because now i have no one...and need to know

    when we got home i couldnt talk because of crying for hours finally i brought it up told him to tell me examples of all these projects i start and put on him {becuase there ARENT any} he couldnt think of not one but 2 years ago his aunt came we were excited and bought a small mirror to hang...he doesnt want me and kids to hang anything so he hung it..thats all he could think of...
    i have no hobbies i have no life.

    my hubby did appoligize and say he was wrong and wasnt sure why he said that...other than people at his job are constantly asking him to do personal things for them and he feels he cant refuse becuase wnating to keep job....but how can he if he loves me treat me less than someone he doesnt like at work?////.he bought me flowers..but now im deeply hurt...he does take off work every 3 months for me to see doctor becuase im terrified of traffic and only drive to "safe areas" i told him id change doctors, he said no...and he had for awhile offred to start picking up grocerys and my prescriptions when they are ready on weekend because he goes for himself to get food bread etc. to make at work every week..hes already there..i told him he could stop...though it helps me alot..he said no he liked helping me and that hes already at store anyways...

    i already feel like a huge burden, i cant do anything but go shopping...take kids to appointmenst...clean house and thats between laying down so it takes me awhile...but still im so hurt...he was the only real person i could talk to about being sick becuase when he asked i thought he really wanted to know and that he i feel like i cant talk to him and just so sad....i dont even go on and on about how i feel..i talk to everyoen on the support boards more than him....i feel like he must have said what he did for some reason though he had no basis on it...i told him im sorry i cant work but he knows i worked as long as i could...ive out up with so much from him over the years stood by him when no other woman in their right mind would...endured alot of mental and emotional abuse, breakus etc.

    and for the doctor to say what she did..made me feel like these illness are nothing..if it was that easy to get better to just go out and do what i use to love to do i would...i told her i enjoy drawing havent done it in 25 years and she suggested i do it and even made remark that some people work and make a living doing no where nor have ever been anywehre near good enough to make a living from drawing..its just something i use to enjoy..she asked about someting i use to enjoy and i shared. mentioned how much i use to exercise walking or job, work , take care family go out et....ive told her before its one of many things im looking for her to help with me accepting and not being angry that im ill.....she asked me why didnt i go walking? just get out and do it.. i told her i couldnt ive tried...and my hubby knows i can only do it taking pain medications or morphine....a person walks 3 or 4 times and even if you dont know they are taking morphine, how can someone egarly jump on those few times? any idiot would see that if a person can only do it that many times... why are they so egar to jump on it and act like its normal? its not i use to be healthy...i know the difference...and becuase i enjoy drawing 25 years ago i should get a job doing it? seriously? and these illness my not be like lupus but from what i read they are, but someone with lupus cant be expected to do anyting because they are was like a slap in the face...

    ive read where others have posted being made to feel the same...i think someone said they had cooked one night and then they were expected to do it all the time...its like with these illness if you push yourself through the pain and exhaustion knowing that it will probalby be worse later, if you do the least little thing like cook dinner your expected to be a chef...anyone who has to mow lawn your expected to become a landscaper...

    i felt belittled and betrayed...the only thing my hubby did take up for me while there, was whne consuelour asked what would make me happy i told her to be healthy and to work again, working was my social life and i loved and miss it...she told me to go get a job then...and hubby told her no one would hire me beucase i couldnt be productive becuase of constantly lying down, memory problems pain exhaustion etc...

    as i said hubby has appoliged several times...but at this point i feel like i have no one in real life to talk to now...i love helping him do things...and he made me feel like im a huge sick burden...from now im im not going to say how i feel, ill lie say im great, fine whatever...if i need anything i will do without...its going to be hard because of him offering to do some of shopping and getting medications while he is at the store anyways but i will just deal with it...sometimes i wish i would just disappear and no one would have to be burden by me...

    if they knew how hard it is for me to go shopping to the doctor dentist etc. they would understand..the pain..exhuasution, the crashes later...the painic the takes alot for me to get out of takes alot for me to live day to day...if conselour could feel my pain..and be by me watching me load buggy high is it will go..rushing running about...then come home with me and see me crying..taking medications praying they will work...even talking to family on phone once a day is is exhastiong...taking morphine to walk around neihbroughood to spend time and encourage my daughter to walk is embarassing that i have to take medications to do it...the paranoia...the sadness and depressiong..

    sorry so long..just needed to do those who NO ONE do what they need to do?
    sorry if this post twice im upset not sure why didnt post first time had to log in againg...
  2. Anne P

    Anne P

    I'm sorry you had this experience with the counsellor Hurtingallthetime. Maybe you could forgive your husband for his outburst. Perhaps he was just letting his frustration out about this illness. My husband too someimtes shocks me with his non understanding of my illness yet mostly he does understand and is very helpful. We don't want to throw the baby out with the bath water so to speak:). If he is helpful and wants to help why not accept it and accept his apology and move on.
    Your husband sounds like he is truly sorry and wants to be helpful.

    Why not focus on the counselling and seek a counsellor who understands CFS/FM and invisable rare illnesses. That sort of counsellor would be of help to your husband too. By all means don't (as I did) try to continue on with a counsellor who does not accept we are ill. We won't win with that person.

    Its great that she has been so helpful to you both in the past but maybe you weren't ill then?

    Be kind to yourself during this hurting time.
    *GG* likes this.
  3. Googsta

    Googsta Doing Well

    I am so sorry you went through this Hurting. I am so mad at this so-called counselor! Yes, she may have served you well in the past, but she is clearly very ignorant when it comes to M.E as well as Depression.
    I guess that's what I find the most disturbing actually, you say you are depressed & she tells you to get a job? Is she a trained Psychologist?
    She has no business in this area of work IMO. I went through this myself a few years ago, the counsellors I had access to had a simple & straight forward solution to everything, I just became more & more depressed.
    Please seek help elsewhere, ask around for a sympathetic counsellor, post a thread here maybe.
    This playing the victim stuff is utter rubbish, once I found the right Psychologist I improved ten-fold. People feel victimised because they are bullied & cornered, their needs are not validated.

    I would be cut to the core too if my hubby did that.
    There have been times when I don't feel like he backed me enough, it took a bit of getting through but he fully realised what he had done. Don't avoid asking for help or say you are fine, you will only hurt yourself in the long term.
    If you find it hard with brain fog & the like, maybe sit down & right a letter to him. He will never understand unless you communicate your feelings & your needs. Try to keep it simple & use statements like "I felt betrayed", "It hurts me when..", "I need you to.."

    I'm sure you support & take care of him in his hour of need, your needs are no less important.
    Whenever possible, do something special together even if it's for 5 minutes. Sometimes if I come across something funny online I'll save it & share it with my hubby so we can enjoy a laugh together. Could you manage a picnic whre you just pick up some healthy take out & lay on the grass?
    If I have an appointment in town, we buy lunch & drive to the park to eat. We don't even get out of the car. Everyone's situation & relationship is differerent, find what works for you.

    Has your husband read much literature about M.E? Most of the M.E sites have literature to help families/partners of sufferer's. Recently we sat down together & watched some lectures on M.E by Dr Cheney, it helped remind my husband how limited I am & it helped me too.

    Darling, you CAN enjoy a measure of happiness again even if you are never fully healthy or active. I spent many years looking back, now I try to look forward & make the best of what I have. That doesn't mean to say everything is rosy or I don't get depressed from time to time.

    I hope something I have said has helped & that it makes sense LOL. All the best, Googsta. X0
    *GG* likes this.
  4. fishersta


    So sorry for you and I can relate --my wife is mostly understanding and supportive then one time she just won't get it; and then it hurts so much isn't it bad enough that you can't do what you want to and used to be able to do let alone then to have to suffer the aded pain of being criticized for not being able to do what yo so badly want to do... I just keep trying to remind myself of how hard it must be to see an invisible disease.
    *GG* likes this.
  5. ukxmrv

    ukxmrv Senior Member

    I hope that you didn't pay for that visit? Does this counsellor belong to any body that you could make a complaint to? In past I had a bad episode with a counselor and I made an official complaint. Standing up for ourselves is important. Even if it takes a long time to have the physical strength to complain I find that it benefits me in different ways and is worthwhile.

    If I was in your shoes I'd be really angry at the counsellor too and very upset. How dare they treat you like that. Ignorant and bigotted.

    What I hear from your postings is how bad you feel. You have been suffering from not being supported for a while I think. Don't know what advice to give as I've had similar ill-treatment before until I was able to find good people in my life. To do this I had to cut out all the bad ones first or work to get them to understand. It's a very hard and long process. Starts with the first step though.

    I've worked really hard to educate friends and family about ME and taken a really tough stance on those who have not been wiling to learn. it did take a long time but I was able to find a good counsellor and I've taken people to sessions to try and get them to understand. It has worked in the majority of cases.

    Wishing you all the best. Hope that the people in your life will be willing to learn. Why not send some literature to that counsellor and tell them just how disappointed you are with them?

    Remember that this isn't your fault. It's bad enough having ones life wrecked by a terrible disease without these people in our lives.
    justy, merylg, *GG* and 1 other person like this.
  6. beaker

    beaker ME/cfs 1986

    I would not see that counselor again. But I would not give up on counseling. It can be helpful. It is important to thoroughly screen someone first ( many will give you short time on phone to ask a few questions to see if worth a office visit to screen) and then make a list of questions. Top of the list : Do you feel ME/CFS is a psychogenic illness ?
    Even if on phone they say no or give you some answer to let you think they may accept it. Make sure at your screening interview/initial appointment you ask them to explain more fully their understanding of this illness. ( Along with a list of questions of other things you would like to know. .... you could ask about their experience treating someone dealing with chronic illness for example) They don't have to be an expert . They need to accept it as non-psychogenic and be open to learning about it.
    There are some good counselors out there. You have to dig for them. Frankly, that would be true for seeing someone for any reason. Lists of questions to interview them. After all, they will be working for you.
    You can try some networking through other illness groups ( cancer society, etc.. ) for referrals to those experienced with dealing serious illness.

    I commend you for trying to work through things and have a happy life, in spite of pain and all the rest this plague has to offer.
    merylg likes this.
  7. SickOfSickness

    SickOfSickness Senior Member

    He had a good explanation of being frustrated with coworkers. He did defend you later and apologize a lot. It was great he couldn't think of examples.

    I remember that feeling. It feels terrible but let the feeling fade over the next weeks and months.

    IMO we have to expect slip ups like that. Some of us have to put up with slip ups, or worse, intentional insults, every day. Or no support as you said. If we have no support at home, we have to get it anywhere we can. I wish it were better.

    You should find a new counselor.
    merylg likes this.
  8. Ocean

    Ocean Senior Member

    Time for a new counselor. As for your husband, if it were me I'd accept the apology and continue to feel that he is on your side and that you can talk to him. And likewise that he should be able to talk to you about his frustrations. It is stressful on the caretaker/spouse side too and he can't be perfect but he apologized and seems to love you and has offered to help. I'd say keep open your lines of communication with your husband, check in with each other about how much he can help without going crazy himself, talk to each other about how you're doing, and do not see that counselor even one more time. Good luck Hurtingallthetime.
    Xandoff, ahimsa and merylg like this.
  9. hixxy

    hixxy Senior Member

    I had an unfortunate experience with a visit to a doctor recently where through some comments that doctor proved how little he knows about MCS and also single-handedly destroyed a lot of hard work I've gone through getting my family to accept the reality of this disease.

    My father was present with me during the consultation during which the doctor questioned the reality of my symptoms and also recommended that I get put in a psych ward. Luckily for me, they can't force this issue in Australia and I pretty much told him where to go. He refused to believe that it is possible for my reactions to set off rapid attacks of rage and depression or that they can make me agitated.

    I won't be taking any of my family into a consultation with me ever again.

    Consequently I won't be seeing this doctor again and I suspect it would be best for you to find a new counsellor! I honestly would have walked out of the appointment mid way!
    merylg likes this.
  10. *GG*

    *GG* senior member

    Concord, NH
    1. Seems like your counselor is unsympathetic and understanding. Does she think you are on Morphine for no reason?! unless you have some compelling reason to stay with this counselor, I would start shopping around. Seems like you have had a few appts with the person, so if they don't get it by now, doesn't seem like they ever will!

    2. I think your husband is frustrated, which is only a natural thing to have happen. I forget how long you have been sick, but I think it takes a while (years?) for people to comprehend and adapt.

    merylg, beaker and Ocean like this.
  11. Valentijn

    Valentijn Senior Member

    I go to counseling too, though mine is (supposedly) for accepting and dealing with having an incurable disease. Even before the psychologist "came out of the closet" and made it clear she thinks ME/CFS is a psychological problem, she made statements I disagreed with from time to time. My fiance is usually pretty quiet at these meetings aside from translating sometimes, so it's hard to tell what he's thinking. I'd be wondering ... "does he agree with what she said?" It made me hesitant to start discussing things she said after we left the appointment, but I was more worried that he might think that I agreed with things she'd been saying.

    Even when my fiance seemed uncertain at first, I'd explain why I had a problem with what the psychologist said, we'd discuss it, and he usually ends up agreeing with me. The thing is, his perspective of ME/CFS isn't the same as mine. He knows it's a physical problem, but he isn't experiencing it like I do, and he hasn't read about it nearly as much as I have. Basically, he's got less information to help him understand everything. So now I talk about these things with him more, both after appointments and when I read something interesting. He also helps me research biological things on the weekend.

    I think the most important thing is that you accept that you have a physical illness that causes you harm after too much activity and/or too much standing/sitting. If you are doubting that, you aren't going to be able to convince anyone else. When you really believe that, you can tell the therapist that she is not a medical doctor, and she should not be giving you medical advice. That way you can set boundaries, while still allowing your illness to be a topic of discussion - "we can talk about how dealing with my illness feels, but I don't feel comfortable with you giving me medical advice or implying it's psychological." If she can't handle that limitation, then you need to find a new therapist.
    beaker likes this.
  12. Calathea

    Calathea Senior Member

    I'm having a bad day and didn't manage to read past the first few paragraphs, but you have my sympathy, hon.

    I wouldn't worry too much about your husband. It was a blip, it happens. He was put under weird pressure by the counsellor, he said something he shouldn't have, and then he later responded correctly by talking it through with you and admitting that he was wrong, as well as identifying that he had been projecting work stress. It's unfortunate that he's having a rough time at work, and that he's struggling with the difficulties caused by having a partner with ME (and they all do, trust me - mine's the same), but he is evidently a loving man who is making a good effort to communicate and work through stuff.

    The counsellor, on the other hand, behaved shockingly unprofessionally. If it was me, I would leave immediately, and I would write to the counselling service and say that you were leaving because your counsellor had told you that a severe medical condition, which has been conclusively diagnosed as being physiological (which I assume it has), wasn't real, that you should do activities which would make your condition physically worse, was talking you down when you tried to explain the reality, and made you very distressed. People who do that sort of thing do not suddenly improve when you explain to them, sadly, you just have to get away from them. What an absolute bugger, though, especially when you've been going there for years.
    Ocean likes this.
  13. Carrigon

    Carrigon Senior Member

    PA, USA
    How people like us get treated is so appalling. I pray one day they are all shown how wrong they have been. It's criminal the way they treat us. I've heard so many similar instances over the years and I've been treated the same as well. I don't know what to say other than, they are toxic and stay away from them. I've managed now on my own for five years. I'm still alive, if you can call being dead living.
  14. maddietod

    maddietod Senior Member

    East Coast, USA
    I'm so sorry, hurting. I agree with everything everybody has already said about the counselor and your husband's very forgivable outburst. I think the counselor put pressure on both of you, and you both cracked. A letter to your governing board and the head of the counselor's office is an incredibly good idea. She probably believes that was a good session; imagine the damage she can do to others if nobody calls her on her utter lack of skills and empathy.

    I agree that going back to her would be counter-productive. She would see it as validation, and you'd be going back to an abuser.

    Does anybody here use online counseling? A local CFS friend of mine does phone sessions with her psychologist.

    Finally, your husband might get a boost from some private counseling. It sounds like he's under a lot of pressure and has nobody to talk to.

    Calathea and Ocean like this.
  15. snowathlete


    Hi hurting - sorry to hear of your experience and the hard time this has caused for you.
    I think alot of us can relate.

    Some counsellors and good, and can help with other issues outside of ME, and even with coping with having ME. But they cant help with the illness, and its damaging even if they do what your one did, and suggest your illness is pyschological. So, although she may have helped your family with issues they had, she cant help you with yours. If you have other issues outside of ME, then i wouldnt avoid seeing a cousellor for that, but you need to find one who understands that ME is a Neurological condition, as classified by the World Health Organization.

    As for your hubby...well, partners dont understand and thats not their fault. If he has said sorry then its best to move accept that, and move on. Even though you feel hurt by it, which is understandable, as long as you have communicated that to him and he has accepted he was wrong, then your best drawing a line under it, difficult though it might be. Its easier to get a new cousellor than it is a new hubby after all.
    But feel free to vent more on here, thats what we are here for, to support each other when these horrible events occur.

  16. maryb

    maryb iherb code TAK122

    Yes I agree with what people have already said, sack the counsellor, out of order making judgements about you, that isn't her/his role. Totally lost the boundaries that make for a good counsellor. They work to help and benefit you after all.
    As for hubby - well I'm in the same position as you and hard though it is, give him a hug and tell him you forgive him:)
    When you sit down and think what these partners do and how much they sacrifice for the love of us, okay they get love in return, it is a two way thing a relationship, but even so, I look at my hubby sometimes and wish so much I could do much more with him to enrich his life.
    ps. I still don't let him get away with too much though:)
  17. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    You need to find another counsellor.

    One who dont understand what you are going throu, probably will be more harm then good for you. I know how hard it is to find good people when one has coexisting mental health issues cause people then often can forget the fact you have ME/CFS.

    From my own experience I know those who focus on the mental health issues over the ME/CFS and cant hold a balanced view of your whole health situation, will leave one feeling more depressed, more anxious and more stressed. A bad counsellor can end up driving someone already in our state to suicide. We get enough crap with people as it is without the ones supposed to be helping us, giving us crap too.

    People often do project their issues onto others and from what your hubby said, it does sound like he has done that to you. You may need to try to put that situation behind you with the realisation it was HIS ISSUE and NOT YOU or something you've done. He's probably stressed about everything (his work... worrying about your health etc) and unfortunately at times stress does make people act irrationally at times.

    You ARE NOT being a huge burden. You need to take a good look at all the things you still ARE doing even when so not well... just keeping a house clean is a big thing.

    I wish you could see your achievements and all what you are currently doing... you deserve a medal. I dare say your counsellor certainly isnt helping your confidence and isnt helping you to be positive about what you are currently doing right now. A good counsellor will help you to focus on and see that there is still so many positives in your life.

    You should be patting yourself on the back for doing all those things which are currently so so hard for you to do.

    I nowdays have a lovely psychologist who understands just how physically sick I really are... I really hope you find someone like mine.
    ahimsa and heapsreal like this.
  18. hurtingallthetimet

    hurtingallthetimet Senior Member

    thank you all for your replys and advice, i have cried off and on since this happened and crying like a baby typing is usually really bad and probably will be more so since im crying, i have no one to talk to but you guys and it means alot...

    i feel like i have been betrayed by my best friend {my hubby}myabe im bing too sensitive but im devastaed...i did except his apppoloy but it still hurts deep in my heart....ive seen the conselour for many years since being ill 2005 or maybe a little later she is suppose to specialize in these illness...she has seen me and my family for alot of other stuff.. and has helped alot..but im shocked at how she treated me..
    to say that if i can force myself out of bed i can get out of house get a job...that i dont have to lay down on the time its depression...that if i just do the things i use to ill be was like a slap in the face...she made me feel lazy and ashamed...i tughout she was encourageing me to do things i use to love like a few garage sales but even though i told her it wiped me out...she was like well people get tired everyday and still work...she even said once alot of womenw ould trade lives with me in a heartbeat to sit around at home and not work..that i was lucky i didnt have to work....i told her no they would beciuae of the pain and fatigure...she knows id worked my whole life and loved and missed it...

    i know the difference i use to love to work to be active and healhty.....i felt like i was having to defend myself to her....she said its all a state of mind...i can do whatever i want to..its hubby agreeing and adding his cruel comments that hurt to the bone...i cant stop crying...i layed in closet crying past two days all day long...he sees waht i go thorough...the consleoiur is suppose to be educated on these illness...but they treat them like thtier not real...i wish there were a test for us to show how these illness feel...

    the only thing ive hung onto is my kids if it werent for them i woldnt be here...the conselfour even brought up didnt i want to be a good role model for my kids...
    its my hubbys treatment as i said that has me most torn to pieces...i never realized i was such a huge sick useless burden to him...he appoligized but the words sitll hurt...i didnt talk to him today for first time ever i think...o feel like someone i love has died and i have no one left in this world woho cares..its always been lonely at times becuase all of superfical friends dumped me but i thought me and hubby had good relationshiop, i had his back and him mine and to hear the horrilbe hurtful things he said i just feel so useless and unwanted...
  19. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    ouch... you are probably left needing counselling from that counselling.

    Its completely understandable his words would of hurt you. I think those who we are the closest too, have the most capability to hurt us the most. Keep trying to talk to him..try not to allow one episode to greatly impact your relationship...not talking to him could make things worst.

    It may be wise to keep him thou away from not a clue counsellors who may taint his views on the whole ME/CFS thing esp when they are supposed to be knowledgable and used to working with people with this illness. It probably leaves him feeling very confused about whether the illness is just in your head or not.

    Maybe your local or state ME/CFS society can recommend a good counsellor to you.

    The English Dr Wessely is supposed to specialise in this illness too!!! . Just cause someone is supposed to specialise in it, it dont mean at all they are good with helping patients with it. Take care.
  20. snowathlete


    Personally I would avoid any counsellor who claims to specialise in treating ME. Unless they also state that it's a physiological illness and they help you cope with that. It rings alarm bells for me because it suggests they think it's in the mind.
    Both my parents are consellors and they would never say what you consellor has said - putting that guilt trip on you - totally shocking and unprofessional. I don't know what qualifications your consellor has but you don't need a lot of training to be allowed to offer counselling like CBT (that's why the NHS over here like it -it's cheap) but it's probably worth seinfeld one who is better qualified.

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