A friend told me that she heard a couple of comments from her co-worker, about another partner who had fainted because of the side effects of a new medication to treat her fibromyalgia (post-orthostatic hypotension, or stunning after standing up too quickly ).
While they were carrying her on a stretcher, her words were: “Nobody can be so sick”.
In what seemed to be a 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 became a kick in the stomach, when he continued, “so I can go ahead and rest. I have found two students to take their place during the summer. “
Recently, a person that we had working in our patio resurged the subject.
The contractor mentioned to my husband that his wife was with a disability. When my husband answered that he understood because I am too, the contractor hastened to say, “Yes, but his wife looks much better than mine.” My husband answered eloquently: “It seems he can easily deceive him.”
When I was frustrated and disappointed about the possibility of rain during the baseball game (now postponed), I wrote on Facebook about it, I just managed to get a relative, who also has a chronic illness, to answer: “Do not let your illness rule your lifetime”.
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, can not fully understand what it implies, but I am still surprised at the level of difficulty that people have to be understanding.
Of course, we also have difficulty understanding the variation of symptoms, and how our level of functioning can vary from day to day (even hour by hour), but, even so, it can be emotionally annoying to find those who seem unwilling to listen and to learn .
No, I can not fully understand some of the daily sufferings and tribulations that happen, for example, a cancer survivor, but that is not why I will minimize or ridicule another.
As a child, I remember visiting older 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 hall reading (with much enthusiasm), our medical encyclopedias.
The most important thing for me was that my mother and grandmother explained to me the impact of the disease on the person, focusing on the person in the first place.
Meeting with those who do not have an emotional feeling towards others leaves me stupefied.
Yes, I suppose I am quick to judge them, as they judge others.
I realize that not everyone reacts in the same way to diseases.
Some may even respond with fear and naivety.
Probably the most difficult factor for many of us is when we listen to the closest ones, 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-provoked?
When a person lacks empathy and makes insensitive comments, it makes me wish they had to live my life for a single day.
They would kiss the ground, and would be grateful to return to their normal body afterwards.
I have no other option but to continue in it.