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 — that it is just that, an illness, not a transient condition. I have smiled politely while biting my tongue when a person informs me of the newest cure for my illness, or that they used to have chronic pain but applying a new pain cream, supplement or even changing their thoughts, brought about a cure.
Callous and uncaring
A good friend said she was appalled to see how a co-worker with fibromyalgia was talked about behind her back. The co-worker was being taken to the hospital after she fainted from the result of a side-effect of a new medication that produced orthostatic hypotension. Other employees accused her of feigning, stating that nobody can be that ill. My friend could not believe how callous and uncaring they were.
As a person with fibromyalgia, I, too, become outraged, pained and completely baffled when I hear of such experiences. Why is such cruelty, disregard and neglect exhibited to us? One issue I found in losing quite a few friendships is having my inconsistent behaviors taken personally. If I cannot make a dinner party for the third time, then they think I do not want anything to do with them. Some invitations were from friends who have known my husband for many years, yet we were unexpectedly placed on the black list. Attempting to open communication on the subject with hopes of an impromptu get-together, the comments were “Well, look who finally decided to call.”
I wish I could say that my husband, who was my fiancé at the time of my diagnosis, was able to hold my hand and assure me we would work together as a team. But he had been introduced to fibromyalgia many years earlier through an aunt who was, regrettably, shuffled from doctors to hospitals trying to find answers to the varied symptoms. Unfortunately, in the early ’80s, the American Medical Association had even less understanding of the illness; the standard diagnosis was a psychosomatic condition, where the “pseudo-pain” was considered part of an anxiety or a personality disorder.
Treated harshly
While persons suffering from a psychiatric condition are treated better today than 40 years ago, still the impression is that the person is somehow not credible in thoughts or behaviors. This was the label his aunt was given by the family as a psychiatric case: A hypochondriac or someone who is so self-absorbed with her falsified symptoms that it is not worth socializing with her.
I have been treated as harshly, but some still wish to find easy cure-alls or are almost certain that my illness cannot be as bad as I exhibit. While my husband did not treat me as such, he still saw his aunt and a couple of friends become withdrawn and lose a lot of their verve. He feared seeing my “Tiggerish” (his nickname for me) style dissipate, too. At one point, I recall informing him if this was an issue for him, he didn’t have to marry me. I said that more out of frustration than feeling hurt, for he could always walk away from it; I had no alternative.
Thankfully, since the Social Security Administration now acknowledges fibromyalgia as a bonafide illness that leads to disability, more medical professionals also are treating patients as persons with a neurological illness and not delusional. Sadly, this does not stop many from being unwilling to learn from us or are too quick to judge.
The message I want to convey is keep your head up. Realize this is an illness that is not of your doing and no one has the right to make you feel belittled, guilty or treat you poorly. As time goes on, you will realize this and will become confident in the ability to tell such persons that you will no longer tolerate their behavior.
While you may be pained by some you thought cared, there are people who do understand and care. They are easily reached through social media and local fibromyalgia support groups. The positive aspect is you may make special, long-lasting relationships with persons you may not have met otherwise.
Next week, Part Four: Where to Go from Here
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
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
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.
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.
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.
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
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)
Excellent article. It seems every word came out of my mind. Thanks for sharing. We are not alone.
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. 🙂
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