Another great interview with Meghan O’Rourke. Here are some quotes that stood out for me this time:
I used to say to one of my doctors that I didn’t care that I was in pain. The thing that undid me was the brain fog and the fatigue, because they subsumed my entire being. They washed away any effort of will that I might have. And so they made it impossible for me to write.
This is so true for me. I can tolerate a lot of physical pain. I didn’t know how much until with health coaching, hard work, and a good doctor I started to feel better. But I couldn’t, still can’t, push through fatigue and brain fog.
[With invisible illness] there’s no one coming to your bedside, there’s no meal chain organized.
I didn’t think about this just now but I have absolutely seen this play out with my mom. She’s been dealing with autoimmune disease for about 30 years. I don’t think she or my dad felt it was reasonable to ask for help with that, and so often when anyone in our family has talked about it, we’ve been met with advice about going gluten-free, doing acupuncture, meditating… These are all good and valuable things, but the contrast with the outpouring of questions about how people could help after her leukemia diagnosis is striking. Instead of “Oh you should try this” it’s “What can I do for you?” I suspect there were days when my mom was at her worst with Hashimoto’s that she was as low energy and could use as much help as she needs now.