On Fatigue
Fatigue is a huge part of my life, that I am sure I could write a million essays about. Here is something very short I wrote about how fatigue impacted me in 2018 and 2019, and continues to today.
I didn’t know when I got to Maine that I would spend a lot of my time there in bed, fighting off severe fatigue. It was hard to think about homework or being in a new town or making new friends when I hardly felt awake for a minute of the day.
Sometimes, I'd will myself to walk downtown to Good Will or the bookstore. Then I'd come back to my dorm and spend the rest of the day recovering.
At first, I thought it was just my Hashimoto's. I didn't think it warranted a doctor's visit because hopefully it would go away as I spent more time on Levothyroxine. But it didn't. I went in to get my thyroid levels checked, as I had already been scheduled to do after a few months. I was concerned when it turned out that my thyroid levels were already back to normal, because that made it less likely to be the cause of my fatigue.
I went to see a doctor who was filling in for my usual doctor. She didn’t seem to want to do any tests. She decided that I was depressed, despite me never mentioning I was depressed or having any real symptoms of it. I suspect this was because of the word "bipolar" on my charts. She referred me to a therapist even though I already had one. I was extremely upset by this unhelpful visit.
I still don’t know what exactly caused the fatigue, and unfortunately it has persisted. It is now possible that it is due to my POTS, or my hypermobility, or Fibromyalgia, or vitamin deficiencies. It could be any doctor’s guess. I hope to find out someday, or at least find a way of coping with it better (I am working on that). I am grateful that it no longer impacts my ability to attend college as much as it once did.
I don’t think people talk enough about the emotional impact of living with fatigue. For me, one of the worst things about it is the guilt. First, there is the obvious guilt over how little I am able to do. I want to do homework or clean, I have to do homework or clean, but I feel too exhausted to do either. The exhaustion lasts most of the day. It occasionally goes away at night, or even for a few hours during the day. But it is a state I am in most of the time, so I spend a lot of the time feeling guilty because I am not doing enough.
The other thing I feel guilty over is the fear that I am causing the fatigue. That I’m not exercising enough or eating right or doing everything I can to get the best night’s sleep (is that even possible?). But I know that isn’t really the case. People with worse exercise and sleep habits feel more rested than I do, I’m sure of it. Health is more about luck and circumstances than anything else. I don’t think I came up with these feelings of guilt on my own, though. I think they are a product of a society that values “productivity” over rest and views patients with fatigue as lazy people who are faking it so they can get out of doing hard work.
It’s difficult figuring out what causes fatigue. I could fall into a trap of endlessly looking for “cures" that just cost me more and more money. I could go to doctor after doctor who just tell me I’m depressed or anxious. I’m hoping for more clarity about this one day. All I can say is that it should not be this hard to be a patient with fatigue. We deserve more than confusion, medical gaslighting, ableism, and treatments that don’t help us.