I follow quite a few people on Twitter that are suffering with CFS/ME or LC (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) (Long Covid) and a consistent stream occurs; they are ignored, ridiculed and condemned.
Having to cope with a disease that doctors are unable to fix obviously creates stress but to get kicked while on the ground by others who chose not to understand is another. I found that people who engage in this have defects of their own. These are people who suffer with either Dunning Kruger Syndrome or have poor social skills, these poor skills tend to irritate those people the most and for good reason.
The Dunning–Kruger effect is a cognitive bias whereby people with low ability, expertise, or experience regarding a certain type of task or area of knowledge tend to overestimate their ability or knowledge. -Wikipedia
Whitney Dafoe is a ME sufferer and wrote the following his blog:
https://www.whitneydafoe.com/mecfs/?post=self-blame
If I could be doing something I would be. I never choose inactivity. If I am inactive, it is because I am too sick to be active.
I need to keep repeating this to myself over and over sometimes. It’s so hard not to blame myself, to think I could somehow be doing more. To blame the discrepancy between my dreams and what I am able to do physically on my mind or thought process. I try to "psych" myself into doing things a lot. But when I am healthier I do more. I always do as much as I can within my limits.
This is suffering that is directly caused by the prejudice we face; ME/CFS not being recognized by society, the government, the scientific or medical communities not to mention friends and family as being a legitimate illness and having all of our symptoms called into question constantly. If we were treated as legitimately sick people and our illness was understood, none of us would have these thoughts of self doubt.
A lot of the suffering we face is caused by society. Not ME/CFS. Society piles onto the people with the biggest burden and makes them suffer even more. Someday they will look back on this time and shake their heads with disgust.
Until then we need to remember. It is not our fault. It is not our fault. It is not our fault. IT’S NOT OUR FAULT.
When you feel like you can’t do something, you can’t. It’s not your mind, it’s not depression, it’s not a bad morning, it’s not your coffee, it’s not your cereal, it's not the side of bed you slept on, it’s not the monkey at the zoo. It is you being sick and not having the health to do what you feel you can’t do.
The bottom line is that if you feel like you can’t, you can’t. Listen to that inner voice of weakness or strength to make decisions, not the voice of the world’s prejudice. You know your body instinctively. Listen to your body. Respect your inner voice. It’s guiding the way. it’s not a pretty way, but it is the only way.
IT’S NOT OUR FAULT.
Love,
Whitney
Art by El Lissitzky