Discussion in 'Fibromyalgia Main Forum' started by shari1677, Jan 26, 2009.

  1. shari1677

    shari1677 New Member

    I'm sure I'm not the only one with this problem, but just wasn't sure how to handle it. I'm 41 and was diagnosed with FMS about 4 years ago. In Oct of 2008 I had a major relapse and have never recovered. I work at home full-time and thankfully I am able to do that because I would probably be on disability if I didn't. I hardly ever leave the house. I can't do all of my grocery shopping at one time...I'm too tired. I don't visit friends or family....too tired again. I usually have my neighbor pick up stuff at the store for me if I need it. Very rarely, I go shopping with my teenage daughter.

    THE MAJOR PROBLEM: My mother and sister will not accept my disease. I have been to my family doctor and a very well-known neurological specialist in my area. That's not enough. They want me to drive hours away to have another specialist see me. They believe I am not doing my best to work through this and "there has to be something" that I can do. They tell me I am on too many medications - even though they were prescribed by said specialist above.

    The thing is - I know that no matter who I see, no matter how much documentation I get, they will not believe me, and I am nearing my breaking point of patience with them - especially after 4 long years of arguing about it.

    Any suggestions short of cutting them out of my life completely?
  2. joyhoelio

    joyhoelio New Member

    The best advice I can give you is to seek counseling if you can. You are going through a horrible thing, and it is a snowball effect. No matter how hard we try, no matter how much research, articles, and explainations we give, there is just no way that those who do not have this disease, and even those who do, will ever fully understand your pain, your strugle, your sense of loss.
    But with help you can learn to try to accept this, and still love yourself. When I was at my most sick I had lost me. It was as if my life was always a before and after. joy before I was sick was lively, vibrant and so very strong. When I got sick I began to look at myself as this worthless blob.
    It took a stay in a psych ward to help me begin to heal. They helped me realise that I was still the Before Joy, I just had limitations. They also helped me try to cope with the fact that i never felt like anyone believed me. That hurts so much its like, "Why would I choose to live this way, how can you not believe me?"
    We have to remember that our loved ones just want us to be better, they don't know how to make us better so they give all these suggestions that we can take as they don't believe me. They are suffering too! It hurts them so much to see us strugle day after day, they simply want it to go away, and not be real. So those of us who are sick have to come to understand this and know in our minds that we do struggle. But please don't forget who you are, don't let this disease become you.
    Love, Joy
  3. shari1677

    shari1677 New Member

    YOU SAY "We have to remember that our loved ones just want us to be better, they don't know how to make us better so they give all these suggestions that we can take as they don't believe me. They are suffering too! It hurts them so much to see us strugle day after day, they simply want it to go away, and not be real."

    My own mother told me a year back that it was all in my head and if I would just go off of my medications I would be fine.

    So - she really doesn't believe me.
  4. joyhoelio

    joyhoelio New Member

    Beleive me, i have heard the same comments from family and friends. My brother told me I was just doing this to get attention and that I had become a loser drug addict. I know how much it hurts! What I am trying to say is that you can't change others, you can't make them feel what you do. When I started talking about the snowball I meant to add that, as we all know stress and anger and frustrations feeds this illness. You know that you are sick! That is what matters! Try not to let them drag you down. Know in your heart that you feel what you feel, and try to let go of what others think.
    Try to focus on the things you can control, and try not to waste energy on the things you can't.
  5. Janalynn

    Janalynn New Member

    I am SO sorry you have to deal with that. I can't imagine. I am blessed with a very supportive family. With that being said, it is still very hard for anyone to understand what this whole monster is. So short of giving them a lecture, I started giving them snippits - but in a very different way. Instead of telling them how I feel, I would say something like "I am one of the fortunate ones that can still work, a high percentage of people with FM are on disability", or "Gosh, my doctor told me that FM pain can be as bad as cancer pain". Boy, did everyone's eyes open to that.
    It's true - WHY in the world would someone choose this life????
    Is there anyway that they could accompany you to your Dr's appt. I'd give your Dr. a head's up and let them know they are coming with you and you need help with the situation. Maybe, just maybe something he/she will say may resinate with them.

    If they zap the energy from you and make you feel worse, then I would tell them that. Tell them that this is emotionally horrible as it is without having to deal with a family that doubts you. Maybe you can't discuss it with them and in turn, you can't attend family things etc. They'll get the picture that you don't feel well.

    I do agree, that MOST families do want you to try everything possible to get/feel better because they feel hopeless. My family asks me all the time if I can do this or that, will this or that help - they ask out of concern - not disbelief. I have friends though, that never ask how I am, they don't really care, I'm not much fun anymore and certainly don't go anywhere except work, that's it. - I can't waste my energy on feeling badly about that/them.
  6. jasminetee

    jasminetee Member

    I think dealing with nonbelievers especially family or close friends is often harder than what we go through with the disease itself. Since you don't want to cut them off I suggest setting a strong boundary with them. Let them know that this topic is not allowed anymore. They can enjoy your company and you'll enjoy theirs as long as they don't make anymore remarks about your FMS or the consequences it has in your life.

    You can let them know you love them and want to enjoy being with them.

  7. Nanie46

    Nanie46 Moderator


    I am sorry that you are going through this. It is hard for anyone who can't feel what we feel....and harder for us.

    I think alot of people don't know how to verbalize their fears about their loved ones being sick, so they manifest in ways that seem like nagging and disbelief.

    I try to imagine if it were my loved one, instead of me. I think I would want them to keep researching and looking for answers until the CAUSE of the FM was found. They probably are fearful for your future because Dr's only medicate the symptoms.

    I have had FM for 21 years. Fortunately I am very functional. After reading some posts on this board, I decided to get an Igenex western blot. Following Dr Burrascano's guidelines, I knew that it was very clinically significant, even when 3 Dr's told me I didn't have lyme.

    I will be seeing a lyme literate MD in early Feb and for the first time I have real hope of recovery. If you have not properly ruled out lyme as a possible cause of your FM symptoms, I strongly urge you to do that. Most Dr's don't know how to recognize it, properly test for it, or diagnose it.

    I have posted alot of topics related to FM/CFS and lyme.

    Hope things get better for you.
  8. tabby8

    tabby8 New Member

    but i find it very painful to disclose right now, about my own situation. Thank you so much for sharing. Maybe in the near future i can open up about my life. But i wanted to let you know that your story has made me see how similar some of our stories are.
    [This Message was Edited on 01/27/2009]
  9. sydneysider

    sydneysider Member

    I want to say that it's fabulous that you still manage to work.

    As a long term FM (plus some other problems) I know from experience that dealing with family is most difficult. It's that way for most, if not all of us. Sort of comes with the illness. As bazzar as it seems their behavior is fairly normal. One way or another, I'm cut off from most of my family, although I must say they were quite mean by any standards.

    I find it useful to except that others cannot understand, and have even said to people 'you can't understand it unless you've got it'. Somehow, saying that seems to give me the upper hand.

    I recently sent my mother the following link when she told me she wanted to know about FM.

    The last time I heard from her she said 'it's very complicated'.

    There are some good suggestions here. Hopefully you will find solutions without cutting them out completely.

    Good luck to you, and to all of us.