Fibromyalgia sufferers are only understood by those with fibromyalgia

A friend told me that she heard some comments from her co-worker about another colleague who passed out from the side effects of a new medication to treat her fibromyalgia (post-orthostatic hypotension or dizziness after getting up too quickly) While being carried on a stretcher, his words were: “No one can be that sick.”

In what appeared to be a validation for my situation, a supervisor started
her comments, informing me that “he knew a lot about my illness, because he and his wife had a close friend with her.” The remaining comments turned into a kick in the stomach as he continued, “so that I can go ahead and rest. I found two students to take his place over the summer. ” the theme.

The contractor mentioned to my husband that his wife was disabled. When my husband replied that he understood why I did too, the contractor quickly said, “Yes, but his wife is much better than mine.” My husband replied eloquently, “It looks like he can easily deceive you.”

When I was frustrated and disappointed with the possibility of rain during the baseball game (now postponed), I wrote on Facebook about the subject, I only got a relative, who also has a chronic disease, to answer: “Don’t let your disease dominate your lifetime”. Not only was I shocked, but I also hoped that this relative, of all people, would understand me.

Unfortunately, I was wrong – I know that those who do not have certain chronic and debilitating illnesses may not fully understand what this entails, but it still surprises me how difficult it is for people to understand. Of course, we also have a hard time understanding the variation in symptoms and how our level of functioning can vary from day to day (even hourly), but it can still be emotionally disturbing to find those who seem unwilling to listen and learn. . No, I cannot fully understand some of the daily sufferings and tribulations that a cancer survivor is going through, for example, but I will not minimize or ridicule another. As a child, I remember visiting older relatives, in the homes of the elderly and hospitals. Nursing was the second most prominent profession among many of my mother’s relatives.

I even remember a teenager sitting in our corridor reading (with great enthusiasm) our medical encyclopedias.
The most important thing for me was that my mother and grandmother explained the impact of the disease on the person, focusing on the person first. Meeting those who don’t have an emotional feeling for others baffles me. Yes, I think I am quick to judge them, as they judge others. I know that not everyone reacts the same way to illness. Some may even respond with fear and naivety.
Probably the most difficult factor for many of us is listening to those closest to us, making thoughtless comments. Suddenly, we have to defend ourselves. It is difficult to deal with, especially if we are still struggling with internal conflicts over our health situation. Why do many believe that self-control or willpower can miraculously heal us? Why is this particular disease seen by some as self-caused?

When a person lacks empathy and makes insensitive comments, it makes me wish they lived my life for just one day. They would kiss the floor and be grateful to return to their normal body later. I have no choice but to continue this.

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