Vanishing support

Discussion in 'Fibromyalgia Main Forum' started by celina, May 4, 2003.

  1. celina

    celina New Member

    I had an amazing support system withing my family, they helped with my kids, and were always there to help. 2 weeks ago my doctor told me I have FM, now my family thinks I'm just lazy and weak and the doctor whom my family has relied for many years is a quack. I'm groping for support, but being shunned. I am trying to find a way to communicate what's going on to them, but am running into walls.
    I love this board whole-heartingly, from words of encouragement, to little ways of easing pain ( the sock filled with rice has been a God send) and general support, but losing my close knit family is hurting.
    Celina
    [This Message was Edited on 05/04/2003]
  2. Susan07

    Susan07 New Member

    Sorry to hear that. You might do searches and find documents you can print out to give to family members, doctors, etc. Several sites have good simple explanations that may work for your needs. Hope your family comes around soon. I avoided talking about this for a long time and when I went into my last flare had to let people know since I ended up in the hospital - to my amazement I am getting more support than I thought I would.

    Take care, hopefully they will come around soon.
  3. celina

    celina New Member

    I tried to simplify it as best I could, but it seems as though i need to be more scientific, but finding scientific stuff is proving difficult. Like I said they just think I'm lazy.
    celina
  4. kalina

    kalina New Member

    Celina,

    I'm sorry your family thinks you're "lazy." This site has a ton of scientific information that you can use to educate them. Click on the "Library" link above and search away. Good luck with getting the support you need!

    Kalina
  5. layinglow

    layinglow New Member

    Something that may help in enlisting the support and validity from family members is to have them drive you to the doctor. Most offices will let a friend or family go into the exam room with you. Even if one only, makes the trip with you, they will spread the info they heard by word of mouth. I would try a differing one, each time, for awhile. This often gets them turned around in the right direction. Another method is to print out information on the disorder for them, to read. Is there a support group near, that you could ask one of your family members to attend with you? It is important we have our loved ones support in these disorders, it makes all the difference in the world. Once you get one member on your team, as an advocate, they usually go out of there way to enlist the others help, and explain what they know.
    Best wishes, LL

    [This Message was Edited on 05/05/2003]
  6. Mikie

    Mikie Moderator

    Your family is in denial. It is a natural response to a shock and what they feel is the loss of the person they used to know. The problem is that it is even easier for families than the patient herself to get stuck in the denial or anger stages of grief.

    One thing you might say to them is, "It makes me feel very sad that you would rather believe me to be lazy than to accept the fact that I am ill." If this doesn't do it, I do not believe there is much you can do. In time, they may come around, but the harder you try to convince them, the more they will resist.

    This is a common problem for us.

    Love, Mikie
  7. garyandkim

    garyandkim New Member

    as long as they'd like. There is on the top of the page a topic to get the guid. We order 99 at a time and there free here. Great little guide and I put them in every docs office, stores, schools where ever I go. Good for friends and family to and it gives this web address.

    They are in dennial and there are a few more stages to go. They need to get the right support to.

    Printing out and leaving around for them to read is a great idea. We just plaster eveyone and place we go. This month is FMS/CFS awarness I believe it'sthe 12th of May so let's all get the word out.

    Good luck to you and remember we are here for each other, Kim and Gary
  8. Shirl

    Shirl New Member

    Many family members, like ourselves really do go into denial when they are confronted with these illnesses.

    Like many of us, we don't want this to be TRUE! So they find excuses for how you feel. Lazy is first on the hit parade with FM/CFS. Its an easy way out for many of our family members.

    My daughter came up with the; 'You are just tired of commitments' when I would say that I could not make plans to go anywhere untill almost the day the event occured.

    Then she would tell me' Mom, you don't look sick, you can't be sick!'. This went on for a couple of years with her.

    Like most of us with FM, before it hit, we were always the pillow of strength to everyone, the person who volunteered first for anything in our families, etc.

    It is hard for them to accept this new 'person' they are confronted with, plus most of the medical profession have said, and many still do, that these illnesses are all in our 'heads'.

    Be patient with them, and try to educate them as much as possible.

    Thats how I got it across to my family, including my daughter.

    This board alone is full of information, and there are hundreds of books out there also on FM/CFS.

    I sure wish you luck, and hope they accept your position soon, and continue the help they were giving you.

    Shalom, Shirl
  9. POSIE

    POSIE New Member

    IT IS VERY HARD GOING THROUGH THE LOSS OF SUPPORT. I HAD LOST SEVERAL FRIENDSHIPS THROUGH MY HEALTH ISSUES. NO ONE UNDERSTANDS WHAT YOU'RE GOING THROUGH. I THINK THAT THERE IS A MISCONCEPTION ABOUT FM. YOU NEED TO EDUCATE YOUR FAMILY AND FRIENDS ABOUT FM. I WOULD ALSO GET A SECOND OPINION FROM ANOTHER DR. THERE ARE OTHER GROUPS THAT MAY BE ABLE TO HELP YOU: FM SUPPORT GROUPS IN YOUR AREA, CHURCH GROUPS, EVEN BOYSCOUTS CAN HELP WITH YARD WORK TO EARN THERE COMMUNITY BADGE. I HAD A HARD TIME ACCEPTING HELP FROM ANYONE. I'M VERY BULLHEADED THAT WAY. I'M GLAD I DID IT MADE LIFE EASIER. SO TAKE CARE AND I HOPE THINGS GET BETTER FOR YOU. POSIE
  10. celina

    celina New Member

    I am in tears from all of your support and ways of finding more support. A million Thank-you's.
    Celina