I was chatting with a few people about my chronic illness writing when one mentioned a friend with fibromyalgia who also has some cognitive issues. She asked if chronic pain and cognitive problems could be related.
Oh boy, here we go!
Someone else there with chronic pain said that it makes sense to have cognitive issues because the pain can be tiring, but she was a bit vague. I wanted to go deeper.
First, I pointed out that pain can be distracting. I asked, “If I stabbed you with a knife, how well do you think you’d complete a crossword puzzle.” I saw the wheels turning as the others processed that, imagined it. It was graphic, and it got my point across well.
Then, we mentioned how tiring it is to always be in pain. And on top of that kind of tiredness, it’s hard to sleep when you’re in pain, so there’s sleep deprivation, too. I asked how their cognitive abilities are after a few nights of bad sleep. “Now imagine that every night for decades.” Again, they slowly realized.
Finally, I explained how sometimes that thing that causes the pain and also cause cognitive impairs all on its own. In other words, the pain doesn’t cause cognitive problems, the cause of the pain causes those problems. For example, I have Hashimoto’s Disease. Hashimoto’s can have a lot of symptoms including joint pain, digestive issues, cognitive problems, low body temperature, weight gain, hair loss, and more. Notice that one of those symptoms is joint pain. Notice that another of those symptoms is cognitive impairment. Neither causes the other; they’re both caused by Hashimoto’s. Everyone nodded along.
I love that this acquaintance asked these questions and that everyone in the room made the effort to thoughtfully consider what I said. I love that they really tried to understand! Sometimes I hate talking about chronic illness because I just want to forget about it and go have a good time. But sometimes it’s so wonderful to educate people, to help them understand. And now the person who asked will have a slightly better understanding of her friend’s symptoms.
I admit, there are days when I dodge these questions, but today was a good day, so I answered, and I feel great about it. What about you? Do you ever answer these kinds of questions? Do you avoid them? Are you never asked? How do you feel about educating people? Please comment with your thoughts!
The only time I’m asked about chronic illness is when someone thinks they my have ulcerative colitis like me, but are afraid to ask their doctor. I usually just tell them to make an appointment with their doctor asap and find out one way or the other.
I get that too, CM – people ask questions about my illnesses because they think they or someone they know might have one of them. I’m always careful to give the “I’m not a doctor” disclaimer before offering my strong opinions 🙂
I find, like you, I have days when I just want to avoid talking about it all together. Usually because my mind is already preoccupied with pain, fatigue, stress and what ever else. But there are other days when being able to talk openly about what it means to be chronically ill, either because I need to vent or because people express interest. I find the only time I truly am comfortable answering questions or talking about it truthfully is with people that I feel close with. People who know I am more than my illness, I guess who I feel won’t judge me for it. The idea of pitty or sympathy (fake and real) makes me uncomfortable most of the time and it’s usually the reaction I get from acquaintances or even my extended family. When they ask I usually try to change the subject or fib that I don’t know how to explain it or simply say something vague like “it effects so much of my life, it’s hard to say”
I get what you mean Ms. Mango. I used to feel the same way. Funny, I think it’s this blog that has changed how I respond to people now…. I’ve gotten so used to talking about it, even if “talking” is really “typing stuff that a bunch of people I’ve never met might read.” It’s still been really helpful. Of course, there are still those days when it just ain’t happening….
When I was working I made fact sheets for my colleagues in my teaching team. They outlined my illnesses, my symptoms, the things I found difficult or needed help with and some websites for further reading if they wanted to. The fact sheets worked really well as it was easier for people to read than have me explain all the time.
That’s a great idea! Nicely done 🙂