A thought that I often wrestle with is the idea that I should be “trying harder” or “pushing myself.” Although I know that it’s not true, I sometimes question whether it’s my fault that I’m not getting better or am disabled. There’s a common “no pain no gain” narrative that gets applied to many aspects of our lives, and although it doesn’t apply when your body’s energy production system is broken, it still impacts how I view myself. I think the promotion of miracle cures also leads to a sense of “I’m not doing enough” because they suggest that if you just did xyz you’d easily be cured!
When I see other people with ME/CFS going for walks, I think “Maybe I should be trying harder to do that?” When I take rest days, I feel guilty because I could be getting more done in the short run if I just pushed through. When I leave the pharmacy with four prescriptions, I sometimes feel like it’s a personal weakness.
But what would “trying harder look like for me?”
-Not using my wheelchair would leave me unable to leave the house independently without making my condition worse and potentially doing long term damage.
-Trying to “get in shape” would leave me with severe post-exertional malaise symptoms that I may not ever fully bounce back from ( pain, extreme weakness, and fatigue, brain fog, lack of coordination, insomnia, etc.). Pages 3 & 4 of this pamphlet actually outline all the abnormal effects of physical activity on people with ME.
-Cutting down on my plethora of prescription meds would make it harder to function due to brain fog, sleep deprivation, and depression.
-Trying to cook all my own meals from scratch would leave me too tired to do anything else in the day.
-Going on a strict elimination diet would just leave me with more stress, less energy, and wouldn’t actually cure me ( While I know it helps some people, I’ve given a few decent trials and haven’t noticed any results).
Ultimately, the modifications I’ve made to my life are ones I need to make and if you’ve made changes, it’s probably for the best. Everybody is different and two people with the same diagnoses may have completely different needs. You do you and do what you need to do for your mental and physical health. 🙂