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.
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.