Whats your opinion?

Discussion in 'Fibromyalgia Main Forum' started by hbic, Sep 26, 2002.

  1. hbic

    hbic New Member

    I recently finally sent my Father and Step-mother the Letter to Normals and another article that explains how the friends and families of people with FMS and CFS can help and what they can expect. I hesistated doing it I was afraid that they would think I was lying, attempting to gain sympathy or attention by it. They have a history of playing down my health and generally not taking me seriously.
    Well, after I sent it, this was the reply I got.

    Amy,
    Your articles were enlightening. At this point, we have no idea where you fit into this picture, but we will certainly save the information and try to be sympathetic and aware. Hope to see you on Saturday.

    What do you all think she meant by, "At this point, we have no idea where you fit into this picture." And how I should respond, if at all, to this?
  2. hbic

    hbic New Member

    I recently finally sent my Father and Step-mother the Letter to Normals and another article that explains how the friends and families of people with FMS and CFS can help and what they can expect. I hesistated doing it I was afraid that they would think I was lying, attempting to gain sympathy or attention by it. They have a history of playing down my health and generally not taking me seriously.
    Well, after I sent it, this was the reply I got.

    Amy,
    Your articles were enlightening. At this point, we have no idea where you fit into this picture, but we will certainly save the information and try to be sympathetic and aware. Hope to see you on Saturday.

    What do you all think she meant by, "At this point, we have no idea where you fit into this picture." And how I should respond, if at all, to this?
  3. kadywill

    kadywill New Member

    would going to a doc with you be of help to them? IMO, they're still denying that you are ill. My family actually told me that this may well be a real illness but I didn't have it! They said they thought I WANTED to be sick! lol
    They've had to eat those words and apologize. Tsk tsk.....
    My husband downplays my health at times, too, but it's because he doesn't think I should "dwell" on it! I should "buck up" and go on! Easy for him to say! lol
    So sorry..
    Kady
  4. teach6

    teach6 New Member

    One of my sons has a chronic illness. When he was first dx'd I was apparently the only one who believed it. Everyone else, including him was in denial. When he went off his meds and the symptoms returned they finally believed it. Even he recognizes now that he has it.

    Learning to deal with a chronic illness is a big adjustment, not only for the patient, but also for the family members. They need time and going along on a doctor's visit might also help. When they are ready for it you can also recommend books and even videos about it.

    Hopefully with time to adjust and see how you are affected they will accept your illness, as you have.

    Barbara
  5. roro

    roro New Member

    I have a cousin who is a nurse, and she even tells me that I make myself sick, LOL. My sister is the only one who is sympathetic, but who knows what she says behind my back. I have another cousin who has FMS (I have CFS and hepatitis C) and they just finally started beleiving her a few years ago when she needed major surgery for her arthritis.
    Why do people act like this? I cant think of anything more frustrating than saying you are sick and people not beleiving you.
  6. hbic

    hbic New Member

    BY "At this point, we have no idea where you fit into this picture"

    I sent them the Open Letter to Normals and this article:

    The hardest thing is not to be able to work magic for a friend." - Maya Patel
    Chronic illness presents a variety of challenges to relationships at a time when they are needed the most. Most people with Fibromyalgia (FM) feel an ongoing need to talk about their illness and its impact on their lives. At the same time, many people become more distant or reclusive; this is especially true during periods of severe symptoms, because being around others requires energy that is in such short supply. These alternating needs for distance and closeness can be difficult and confusing.

    In addition, a person with FM has experienced enormous losses due to illness. Fibromyalgia often affects every aspect of a person's life, causing a decrease in self-esteem. Once strong and self-confident people may feel inadequate and unlovable due to lack of productivity, inability to work or engage in other activities, discouragement about recovery, coping with debilitating pain and fatigue on a long-term basis, and so much more. Yet the FM patient is not the only one who is suffering. Watching a friend or loved one struggle with an incurable and poorly understood illness often makes people feel powerless and discouraged. But your friendship does matter, now more than ever; and there are many things you can do:

    Educate yourself about Fibromyalgia. Read articles about personal experiences and coping.
    Be patient and caring. Reassure your friend of your love and support.
    Acknowledge the seriousness of the illness. Validate feelings of loss, sadness, anger, and hope.
    Offer to help in practical and specific ways; such as grocery shopping, managing finances, running errands, or household chores.
    Attend doctor's appointments with your friend. Show interest in their medical care and be there to provide moral support.
    Most people with Fibromyalgia both love and hate hearing "you look good." It's okay to say it, but understand that looking good doesn't necessarily mean your loved one feels good!
    Spend time together, enjoying activities that can be modified if necessary.
    Make plans flexible to accommodate unpredictable symptoms and fluctuating energy levels. Be understanding when they must be changed or canceled at the last minute.
    Be wary about giving advice. Don't attempt to "fix" the person with FM or provide a solution.
    Realize that your loved one may seem "okay" while you're together but then pay an enormous price later for the over-exertion.
    Ask questions about things you don't understand.
    Enjoy low-energy activities together; such as watching movies, sitting outdoors, and eating meals together.
    Express gratitude for what the person with FM still gives to you, even though they may not be able to do some of the things they could before.
    Reassure them about how important they are in your life.
    When you are not sure about how to be helpful, just ask.
    Be aware of unpredictable mood swings. Try not to take reactions personally that might seem illogical or over-emotional.
    Talk about the changes in the person with FM and in your relationship together.
    Listen while your friend expresses needs, emotions, and thoughts.
    Express your admiration for your loved one's strength in coping with illness so far.
    Learn to be perceptive. You don't have to be a mind-reader, but you can watch for signs of how your loved one is feeling, or when they may need extra help and support.
    Stay in touch and extend invitations, even when the person with FM may not be able to accept.

    Most important to remember is that just being there and showing that you care means more than you could imagine. Don't give up--just keep asking, listening, learning and growing. Although you may not be able to work magic, the little things you do to show you care can make all the difference.
    -------------------
    References:
    "For Those Who Care," CFIDS Association brochure.
    "Running On Empty," by Katrina Berne, Ph.D.
    "Sick and Tired of Feeling Sick and Tired," by Paul Donoghue & Mary Siegel.

    Im not understand what she meant by "sure where you fit in." I dont want to take her wrong. But, I will tell you this, It made me decide not to go their house this Saturday, which is an hour and half drive away.
  7. JaciBart

    JaciBart Member

    I cannot stress enough how my family has been so incredibly supportive of my situation, we feel like a loser enough by our own doing, it really does help to have the understanding of those we love. I know I must get on their nerves because it is so overwhelming for me and they all just listen and I think they truly do understand, they have never once made me feel like I am just making this up or exaggerating (sp?) this. I truly do thank God for the understanding I get. I don't know what I would do with out that, I guess if I had the problem what I would do is have patience with them, I know it is hard, just keep trying ot help them understand, I am sure they want to but it is hard for them. I once got some very good advice a few yrs ago about a rapist who raped me, I was told to pray for him. I did that daily and I am not sure if it helped him but it did help me.

    Jaci
  8. hbic

    hbic New Member

    Write my father and Step Mother a letter and return to them the check for 20 they wrote me to pay for the gas of the trip. Im not sure what Im going to say, if anyone has anything to suggest, Ill be willing to use it. I cannot worry about who believes Im sick and how sick they believe I am. Or even who cares if Im sick, even if Its my family. Im probably just going to tell them that I understand that they may have heard things about Fibromyalgia that cause them to have doubt, I dont know.. something. But Ill write them the letter and be done with it all.