Greiving the Losses Caused by Fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by COOKIEMONSTER, Jul 15, 2003.

  1. COOKIEMONSTER

    COOKIEMONSTER New Member

    Grieving the Losses Caused by Fibromyalgia
    by Sherron M. Stonecypher

    Fibromyalgia syndrome (FMS) is a chronic pain disorder that causes widespread pain, tenderness, and stiffness in muscles, as well as general fatigue.

    When FMS Changes Everything

    FIBROMYALGIA syndrome (FMS) can cause profound changes in the life of the person diagnosed, and the lives of family and friends. The changes may include loss of income, independence, good health, and future plans. Those affected by fibromyalgia often feel their hopes, dreams, and expectations have been broken.

    Why Grieving Is Important

    When faced with significant change and loss, the normal and natural reaction is grief

    According to John W. James and Russell Friedman, "Grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior." For example, when a loved one is diagnosed with fibromyalgia, you may feel a sense of relief knowing the cause of the symptoms. This positive feeling can be coupled with the painful realization that the peaceful life you both once shared has been permanently altered. These conflicting feelings, relief and pain, are normal responses to fibromyalgia.

    Regardless of whether grief is caused by illness, divorce, death, or another loss, incomplete recovery can have a lifelong negative impact on a person's capacity for happiness. Families affected by fibromyalgia need to recognize when loved ones are grieving, know how to support one another, and find a way to heal from grief. If families are unable to regain a sense of well–being, then over time, the pain of unresolved grief will cumulate.

    Common Emotions Experienced When Grieving

    In her book On Death and Dying, Dr. Elisabeth Kubler–Ross identified five emotional stages people go through after being diagnosed with a terminal illness. The stages she identified are shock, denial, anger, bargaining, and acceptance.

    While Kubler–Ross' work highlighted awareness about the process of dying, people, both professionals and the general public have inappropriately attempted to apply Dr. Kubler–Ross' stages to the emotions that arise after loss. James and Friedman write, "There are no absolutes in grief. There are no reactions so universal that all, or even most, people will experience them."

    Circumstances and culture are factors that affect how people grieve. When reacting to loss caused by FMS, it is possible for family and friends to share the same emotions, or not. For example, a person diagnosed with FMS may feel depressed from the loss of good health. On the other hand, the well spouse may experience anger and the extended family members may deny their loved one has a chronic illness. People simply do not experience grief in the same way.


    Although grief does not occur in stages, James and Friedman acknowledge that many grievers do share common responses, such as:

    • a sense of numbness,
    • inability to concentrate,
    • disrupted sleep patterns,
    • changes in eating habits, and
    • feeling emotionally and physically drained.
    These are normal, natural responses to the loss FMS causes. The duration of these emotional responses differs from person to person and individuals may not experience all these responses.

    While recovering from their losses, it is important for family, friends, and the person diagnosed with fibromyalgia to grieve without following an expected timeline or stages. Recognizing that each individual emotionally reacts to loss in a unique way will make recovering from grief easier.

    Recovering from Grief

    On average, we are not socialized to know how to properly recover from grief or help others who are grieving. When in the midst of grief, James and Friedman say people are mistakenly advised to:

    • grieve alone,
    • give grief time to heal,
    • be strong for others,
    • don't cry,
    • replace the loss with food, alcohol/drugs, shopping sprees, workaholism and other short-term fixes, and
    • keep busy.

    But these pieces of misinformation will not help the person diagnosed with fibromyalgia or family and friends recover from their losses.

    It is important to remember that grief doesn't produce the same emotions in everyone. Furthermore, its impact on our lives cannot be predicted or fully controlled. But recovery is possible from any significant emotional loss. We can actively influence the texture of our lives during this period. Here are some suggestions:

    • express your feelings,
    • ask for help,
    • medicate with caution,
    • stay involved, and
    • if indicated, get evaluated for depression.

    Sometimes people have difficulty recovering from their losses. An outsider's involvement—a professional counselor, clergy, or wise and trusted friend—can help family members recover. It is wonderful when families can work through their grief recovery together. But if your family or you are having difficulty, it's not a failure. You should be respected for admitting you need help.

  2. KayL

    KayL New Member

    initially go through a feeling of relief that there is finally a reason for what's been going on with our bodies. For myself, that quickly turned to a combination of anger followed by disgust, that it wasn't something that could be *fixed* easily.

    My activities have been limited for several years, before I had a Dx, so once I learned a little about FM, I realized that the fact was that at least for now, I couldn't go at the same pace I had always gone, and couldn't do everything I had always done. Most of the time I'm OK with that now. The exception is when I feel good enough to end up overdoing things, then I get angry that the things I accomplished have caused a setback for me.

    I'm a huge fan of acknowledging your feelings and talking about them and accepting them, so I do OK in that department. I have 3 close friends who I can talk to about the way I feel physically and emotionally any time I need to, and that in itself is a huge help to me. My hubby listens, and has really tried to help out a lot more the last few months. I think he feels helpless because there's nothing he can really DO for me. The fact that he is willing to *pick up my slack* is something positive, in my opinion.

    One thing I refuse to do is make excuses and apologize to anyone for what I can't do. If what I CAN do isn't enough for them, they can take a flying leap. LOL All in all, I think we're handling this pretty well here. :)

    Karen