Only someone with a chronic illness knows how truly terrifying this question is.
When it is just a platitude, or coming from someone I barely know or probably won’t see ever again, then it’s not so bad. I can plaster on my fake smile and say, “fine thanks, and you?”
But when it’s family or a friend, someone I care about (and who cares about me) then I dread it. Partly because they really do want to know. I don’t like lying to people I care about. I also don’t like to whine. Also, I don’t really want sympathy. I want people to understand, but I don’t want their pity.
If I’m at the BBQ, birthday party, casual catch-up or whatever, then I’m probably having a good day. That doesn’t mean I am symptom free. It means that my dizzy spells are short and don’t make me too unstable. It means my pain levels are at around a 3 on most people’s pain scale. It means my IBS is under control and that low-grade nausea that I regularly deal with is currently abated. It means I had the energy to have a shower and put on make-up. I might have needed to sit down for an hour after that, but I managed. It means I have taken extra medications and probably did nothing productive the day before. It means I got down the stairs of our high set house and I’m reasonably sure I’ll be able to get back up them.
So how do I answer that dreaded question? I try to be as honest as possible. I say it’s a good day, I smile and change the topic. If they ask again, usually because they are genuinely concerned, then I talk about the latest thing I am trying in my quest to battle the FibroTroll.
I don’t tell them that it means that I’ll have a soak in the tub with Epsom salts and a session in my HBOT chamber to try to avoid having the Troll send me to the debt collectors! I don’t explain that my poor Knight in tarnished armour will have to pick up his shield and sword and tackle all the things that will need doing when we get home. He’ll run the bath for me, then he will have to help me out of the bath, and probably help me dry myself and get dressed. He’ll help me get in and out of my HBOT chamber. He’ll make dinner and clean the kitchen, and if he wants some music on, it will have to be through headphones, so the noise doesn’t aggravate the Troll.
If the function is a big event like a wedding, then I’ll be there even if it’s not a good day. On those days, I dread the question even more. How do you tell the happy couple on their special day that it feels like your skin is on fire, your joints and muscles ache, noises are making your ears throb in a way you never thought they could before you got sick? That you couldn’t even get your own shoes on and your sense of worth is hovering down somewhere near the Titanic? How do you say that, really, all you want to do is curl up in bed and cry?
Those days, I lie. I plaster on that fake smile, tell them I am doing well, and change the topic. It’s easy to do at a wedding, you comment on how beautiful the venue is, how lovely the service was, how great the bridal party looks. There’s endless things you can change the topic to at a wedding. If there’s one thing the FibroTroll has taught me, it’s how to change the topic away from my health.
But long-term, that’s not going to help. Fibromyalgia is becoming more and more common. I regularly hear of someone’s friend or cousin who has either had it for years or just got diagnosed. I am a part of several support groups where people don’t have friends and family who are as genuinely caring and understanding as mine are. For these people, I need to learn to tell the truth more often. I need to answer that dreaded question, in a way that spreads understanding. So, I’m going to try.
The first step in that journey was to start this blog. Partly, I’m writing for myself. I am uncomfortable talking or writing about myself. I dislike dwelling on the pain, the isolation, the sense of loss that comes with giving up your job and independence. My psychologist has been helping me find a new, meaningful life that works with my Fibromyalgia not against it. In writing this blog, maybe I can form a semi truce with the Troll and we can work out a more consistent toll. And partly, I’m doing it for the other Fibro-warriors out there. If something I do helps one person get a little bit of relief from their symptoms, or if something I write helps one partner, friend, or family member of a warrior understand, then it will have been worth it.
People who do not have a chronic illness cannot empathise with the struggle of being sick EVERY SINGLE DAY. But the more people know about Fibromyalgia, and the more awareness there is of this bloody awful illness, the more understanding there will be of the struggles we face. If you are a “normie” (a person who is not chronically ill) please stop before you ask that question. If your chronically ill friend or family member looks like they are struggling, maybe ask if you can get them a chair, ask them if they’ve read a good book lately, or seen the latest episode of that show you like. Give them something other than that dreaded question to answer. If you really want to know how their health is going, ask if there’s been any new research published, or if there’s a new treatment they are trying. Giving them a gentle hug and saying, “I’m so glad you made it, I was hoping you would be having a good day today!” will do so much more for a chronically ill person than forcing them to find a suitable answer to “How are you?”
