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.
That said, it’s now more than 12 years since I was diagnosed and I’ve been round the houses with a few different doctors and my own symptoms. I know what normal is for me, and I have a reasonable idea of what is worrying enough to ask for extra medical help. (And if I’m too tired to figure it out for myself, Tim is pretty good at spotting the signs and looking after me.) I didn’t need extra help when I saw that doctor, I was asking just in case.
I long ago adjusted my lifestyle to help me cope, and adjusted my expectations of myself. Other people might be able to work long hours and volunteer and keep their houses spotless and have amazing hobbies that they excel at, but I need to be selective with my limited energy. I’m OK with that. Most of the time.
As I’ve said before, I’m lucky. Though fatigue is only one of my symptoms, I haven’t experienced the worst side of lupus. It can cause kidney failure, stroke, heart attack, seizures…the list is long. The most common chronic symptom is joint pain. Like fatigue, joint pain is invisible, making lupus one of many invisible diseases that can be difficult to explain. When I was first diagnosed I found the Spoon Theory invaluable for understanding my own situation and explaining it to others. I highly recommend reading it if you’re not familiar.
Lupus affects an estimated five million people worldwide, so it is neither common nor rare. It can be difficult to diagnose as its many and varied symptoms can be mistaken for a lot of other illnesses. Lupus Awareness Month is about just that: awareness. If doctors, patients and the people around patients know more about lupus that will help it to be diagnosed more quickly and treated more appropriately. As Lupus UK’s posters say: make lupus visible. It’s very possible that someone you know has it.