Fibromyalgia sufferers are only understood by those with fibromyalgia

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

In what appeared to be validation for my situation, a supervisor began
his 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 to the stomach, as he continued, “so I can go ahead and rest. I have found two students to take his place for the summer. “
Recently, a person we had working on our patio brought up the topic.
The contractor mentioned to my husband that his wife was with a disability. When my husband replied that he understood because I am too, the contractor was quick to say, “Yes, but his wife looks much better than mine.” My husband eloquently replied, “It seems he can easily fool you.”
When I was frustrated and disappointed by 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 respond: “Do not let your disease rule your life”.
Not only was I stunned, 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 diseases may not fully understand what it entails, but it still amazes me how difficult it is for people to be understanding.
Of course, we too have difficulty understanding the variation in symptoms, and how our level of functioning can vary from day to day (even hour by hour), but it can still be emotionally upsetting to find those who seem unwilling to listen and learn .
No, I cannot fully understand some of the daily sufferings and tribulations that, for example, a cancer survivor goes through, but that is not why I am going to minimize or ridicule another.
As a child, I remember visiting elderly relatives, in nursing homes and hospitals.
Nursing was the second most prominent profession among many of my mother’s relatives.
I even remember a teenager sitting in our hallway reading (with great enthusiasm), our medical encyclopedias.
The most important thing for me was that my mother and my grandmother explained to me the impact of the disease on the person, focusing on the person first.
Meeting with those who do not have an emotional feeling towards others leaves me dumbfounded.
Yes, I guess I’m quick to judge them, like they judge others.
I realize that not everyone reacts in the same way to illnesses.
Some may even respond with fear and naivety.
Probably the most difficult factor for many of us is when we listen to those closest to us, making thoughtless comments.
Suddenly we have to defend ourselves. It is difficult to deal with this, especially if we are still struggling with internal conflicts over our health situation.
Why is it that 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 had to live my life for just one day.
They would kiss the ground, and they would be grateful to return to their normal bodies afterwards.
I have no choice but to continue in it.

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