A Guide for People with ME Trying to Talk to People Without ME
From the wonderful members of #MEAction Living With ME Support Group for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.
Glen Has a Question
I was told this today: “You need to get up and move around, even if you don’t feel like it.”
They meant well, but don’t realize what it does to me. I tried this approach many times over, and that is part of why I am this way today. I pushed myself and crashed many, many times.
I was ambitious, athletic, and in good shape before this. Now I’m at a point where the effort to open a new bottled water makes me feel nauseous and completely depleted.
I feel like everyone was telling me the stove was off. So, I touched it, but got burnt. They told me to try again. It burnt me again. I kept doing this knowing it was damaging me.
It is demoralizing and disconcerting to be told to do something that is harming you. Every time I hear that from friends or family it is bothers me immensely. It is exhausting and feels like you’re disappointing everyone.
My question is: How did you get others to understand that activity makes you feel worse?
I was sick for several years before I was diagnosed or learned about Post Exertional Malaise. I did a lot of damage during that time.
It’s hard enough to fight your own lifetime of habits and desires to do things, let alone with the pressure you get from other people and from doctors.