Learning to Accept Fibromyalgia, Part Three: Anguish

Learning to Accept Fibromyalgia, Part Three: Anguish
Editor's note: This column is third in a series. Previous installments include: "Learning to Accept Fibromyalgia, Part One: Coping and Careers,"  and Learning to Accept Fibromyalgia, Part Two: Delving Into Your Emotions. After dealing with the onslaught of many different emotions, you have to take the time to grieve the person you were before the illness. Many I have met have described themselves as "highly active," "multi-tasking," or "Type A personalities" who successfully juggled many roles. I include myself as one of them, especially in areas I was most passionate. When you are able to excel at many things this is not only rewarded in the work field, whether being the high-achieving employee or the super mom. With such accolades, why would one want to stop? In fact, that is the biggest issue we grieve over and is part of the guilt-laden comments we receive. We are social creatures who are taught early on that it is what you do that matters. Examples include "Actions speak louder than words," and  "What have you done for me lately?" To my great sadness and dismay, those closest can be the harshest critics. During the early stages of grieving and trying to open up to others for support, such negativity will confuse not only your perception of matters, but guilt-ridden comments can be absorbed easily like a sponge. I know most with fibromyalgia are probably shaking your heads at these comments: "What? You are STILL sick?";  "You need to stop being so sensitive; grin and bear it"; or even "I wish I had time to be sick or in pain." If loved ones carry such low opinions or disbelief, or challenge you about your illness, then certainly they must be correct, right? Some are well-meaning, but still don't grasp what we try to explain about our illness —
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  1. Pat Oneill says:

    Yes pepole do look at you when say you are in pain tired and can’t move they think you are looking for sympathy but hay you don’t need it I enjoyed walking a lot interior design now it takes it all out of me it isn’t fair how we have been dealt with this card we don’t ask for this illness but we have to learn to do best we can I have had problems for 18 yrs and only diagnosed last year was told by no end of doctors stress and it’s all in my head but we know our own body and now it ain’t normal to be feeling so helpless it’s hard for children and close people to understand how it feels where is the lively person they knew dreaded fibromyalgia has them now I still try and carry on with things but one day active three days pain and tiredness

    • Lori Galpeer says:

      Is there any way you can par down your career . . . Perhaps work every other day, flexible hours for those days you wake up and know you need a few more hours of sleep. If there is any way to still work in your career without making yourself sicker trying to maintain a full time schedule. It is a shame that some health professionals are of the belief that ‘it is all in your head’ or ‘just exercise more, then you will feel better’. It is like other types of conditions that are rarely understood, the tendency (of medical professionals and people in general) is to write it off. I once went to an allergist, for wheezing, and after being ruled-out for asthma, put his hand on my shoulder and said, “You are just overstressed”. I know what I was experiencing, during certain conditions, and stress had nothing to do with it. I finally found a more experienced allergist, who ran a couple of tests and was able to find out I had a allergic reaction. The symptoms themselves are enough to feel frustrated, but, the uncertainness of when and to what degree the symptoms will be day by day can make one feel helpless. Main thing is to focus on yourself and ways to decrease the symptoms, in hopes of decreasing the future flares too.

  2. Em says:

    I have accepted fibro. My family cannot. They think I am attention seeking or something. I have stopped trying to be a part of anything because of misunderstandings. Is there an island somewhere for humans w/ invisible illnesses?? please let me know.

    • Lori Galpeer says:

      It amazes me how those closest to us are unwilling to listen, provide support and in many cases, turn their backs on us altogether. I am sorry that your family has treated poorly. As mentioned in one of the articles, my husband’s aunt had the illness back in the 70s/80s (when this condition wasn’t even acknowledged as an actual illness), and forever since she too is treated as a ‘attention-seeker and hypochondriac’. Sure she was an attention-seeker, she wanted someone to listen to her, to help her get answers and provide support. At least you know that you can join FMS groups on social media. There is also an actual support group, under the Invisible Disabilities Association (www.inspire.com/group) you can add to list of fibromyalgia groups for support.

  3. Irene Rendlick says:

    Because people cannot see Fibromyalgia then tend not to accept that you maybe in pain. I am on a reduction of steroids and since now reduced to 5mg all the pain has returned, then pain moves around the body so no 2 days are alike. However my husband has PMR and has been weaned off his steroids and he is in extreme pain. He has back disc trouble and waiting to see a Rheumi but in the meantime I have to cook the meals etc which is hard,yet he does not seem to recognize the fact that I am also in pain

    • Lori Galpeer says:

      That has bound to be a difficult situation you are enduring. Why is it that people have to ‘see’ an injury/illness in order to believe the extent the person is enduring? I am sorry that you and your husband have to live with so much pain. It is a shame that he is not able to understand that your pain is not something to be discredited. Have you ever had a discussion with him and asked him? Just because his pain is related to vertebral condition, and yours is muscular – both deal with the central nervous system . i.e. pain! Helping him to see how similar what you are both enduring is something to rely on each other for support/comfort – as well as chores, is worth at least getting a better understanding of what he is thinking. I say that for my husband, who has chronic back problems due to injury, understands many factors of my illness, but, the fatigue and flares were something I had to explain to him. While I can’t expect him to fully understand what it feels like, no more than I can fully know what his back pain feels like, we both can rely on each other for support – definitely 100 times more than family would. I also hope that you return to your pain specialist/rheumatologist to alert him that the pain has returned and helps develop a treatment approach that works best for you. Most respond well to mixture of meds (ex. antidepressant; muscle relaxant; pain-relievers) and some form of relaxation (ex. meditation, Yoga, walks)

    • Lori Galpeer says:

      Thank you, Ana. We definitely are not alone. This fact alone should provide comfort to us all in times of feeling alone and misunderstood. I am glad that I was a ‘mind-reader’ to what you felt too. 🙂

  4. i have had fibro for over 10 years.For a long time, i didnt know what I was dealing with. My previous doctor did not believe in fibro.I went from being pain free to constant pain and fatigue. one of the hardest things for me, is being unable to travel and visit my sister,who goes to florida in the winter.She doesnt understand why I cant just pick up and join her.How I wish I could!!!It is the constant explaining,and not be belived,that is so hard

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