Roughly once a year I write a post about having lupus (SLE), partly to raise awareness of the disease, but also because it helps me to talk about it in a space where I’m not worried about boring the same poor people who hear about it all the time! Here in the UK, October is Lupus Awareness Month so this seems like a good time.
The symptoms of lupus that I struggle with most are fatigue and brain fog. I had a really dispiriting experience with my rheumatologist earlier this year when I asked him if there is anything I can do medically to help with this and he responded “Everyone gets tired.” That’s so incredibly unhelpful and frankly offensive, though I didn’t have the words to explain that to him at the time.
For one thing, chronic fatigue is not just “feeling tired”, it is extreme and long-term and has a lot of side-effects that can make daily life really hard. Think about the most tired you have ever been. You may have experienced headache, sore eyes, double vision, dizziness, nausea or confusion. You might find yourself unable to think clearly or concentrate. You might find lights too bright, or noises hard to distinguish. Now imagine some or all of that happening every day, no matter how much sleep you get or how careful you are to eat healthily and do regular exercise.
A medical professional should know that’s what chronic fatigue means. So did he not believe me, or was he just being glib without realising how rude and dismissive it sounded? I’m annoyed at myself for not speaking up but then one of the things that I find especially hard is conversation with strangers. I often can’t manage to say what I want to because either I can’t find the right words, or I’m too tired to judge the right moment to jump in and speak.