Q&A with an Anonymous Advocate - ME/CFS
“I recently read that people don’t listen to facts to form an opinion—they have an opinion and look for ways to confirm it. That applies to people who have an opinion about someone suffering from something that isn’t visible. I KNOW that people don’t understand, and if they experienced what I had, their thinking would be radically different.”
What were you experiencing that led to getting a diagnosis?
I had major issues with my sleep and extreme fatigue to the point of being in bed for many hours. I had many episodes of heart palpitations, muscle pain, mental fog, and inability to concentrate especially after a difficult night. Those are some of the major symptoms but there were more!
How does Chronic Fatigue Syndrome impact your life?
Well, I would say that my life has been pretty much devastated. I haven’t worked a day since I got sick in 1991. My day is always dependent on how my night has been. Socially, my life has tanked, particularly in the latter part of the illness. Many of my goals have been completely set aside.
What does self-advocacy mean and how have you managed to advocate for yourself?
I’m sure people will differ in their opinions on this. I’ve come across people with CFS who are rather militant in their opinions about making people understand their suffering. I’ve taken pretty much the opposite approach. I don’t want to alienate people by pushing myself on them, so I have thought—if people want to know, they will ask.
I have let people in our circle come to me because I didn’t want to overwhelm people or push them away with too much information. I have come to realize that there are people who genuinely care and want to know stuff, but that’s not a huge number of people. I’m thankful for the ones I do have.
Have you ever faced discrimination or judgement related to your health condition?
Yup, I have faced discrimination as have many people with Chronic Fatigue Syndrome. I don’t think anyone among my family and friends would have called me lazy, but that’s what I’ve been called. Some have believed me while others have not believed that I have been sick—a rather common reaction. You can’t “see” CFS and if a person is having a good day, then they seem perfectly normal and healthy.
If people want to think wrong things or even bad things about someone, you might never change their way of thinking. I recently read that people don’t listen to facts to form an opinion. They have an opinion and look for ways to confirm how they think. I think that applies to people who have an opinion about someone suffering from something that isn’t visible.
I KNOW that people don’t understand and if they had experienced what I had, their thinking would be radically different, so I don't hold it against them. Sometimes it takes someone suffering even a bit like you—then they stop to think about how they have viewed others. I have had people change their mind about me when they have gotten to know me and realize that I’m telling the truth about the symptoms I’ve experienced.
