Day 26 – Make a chart/meme/poster and write about it

Simon and Garfunkel once sang there must be ’50 Ways to Leave Your Lover’. I’m no expert on breaking up, but I suspect there must be at least 50 ways to explain you’re in a flare to someone who doesn’t know what a flare is.

The word ‘flare’ is both a useful and useless shorthand in some ways. Any person who suffers from a chronic health condition, and their closest supporters, know implicitly what a flare is (let’s call these people your ‘flare circle’), but what about the people who don’t know what a flare is, and don’t want you to explain it to them? This group outside of your ‘flare circle’ may include your family, friends, acquaintances, colleagues and employer. What can you say to explain a flare to these people when it happens?

In the early days of my current job, I had a close relationship with my boss in terms of disclosing my illness, which was great because I could say ‘autoimmune stuff’ (as vague, but as meaningful as ‘flare’), and it would be understood that my performance was going to be down for a few days or weeks (hopefully not months, please!) until I felt a bit better. When I might feel better was something I couldn’t predict, but as long as I had the catch-all phrase of ‘autoimmune stuff’, I was covered.

You may have experienced such an understanding with other key people in your own life. For a few months, or maybe a year or so, your new confidante seems to understand the limitations, even when it gets in the way of your responsibilities in the relationship. The problem with ‘autoimmune stuff’ is, unlike most illnesses, there’s no resolution in sight. After a time, a kind of ‘illness fatigue’ sets in. I’m sure this is an actual syndrome. You’ve likely experienced it, dear reader. And unfortunately, it’s not you who comes down with it.

Gradually, people become slightly astonished that you’re still sick. They stop inviting you to events and including you in their lives (after all, you’ve said ‘no’ so often, it must surely be a grudge you’re holding, rather than a bona fide health condition). They ask how you are, but you see a tiny grimace if the explanation takes a little longer than 10 seconds, or includes the words sick, fatigue, exhausted or any number of words that are considered potential ‘guilt triggers’. In reality, you don’t want anyone to feel guilty. You just want to explain that yes, you’re still sick. I’ve found that once a confidante develops ‘illness fatigue’, I begin to limit the real story to things like “I’m good” or “I’m okay”.

It’s amazing the little stories you can tell with those two word answers. “I’m good” means “I’m managing my symptoms, not in a flare and not more than mildly depressed. I’m functional, and while I can’t necessarily go for a walk or clean house from top to bottom, I’m managing.” At the other extreme, “I’m okay” usually means, “Throw me a rope! I’m over the edge, so tired, and in so much frigging pain that I’m sliding to the bottom of the abyss.” Most people outside the flare circle are savvy enough not to ask what “I’m okay” means, as I think they actually know what it means.

I rarely use the “Not so good” explanation, which is another guilt-trigger phrase, and the person is usually compelled to ask, “Oh, why?” but you can tell they’re dreading the answer. I only use that one if I have an almost normal symptom, such as a migraine or nausea, because then we can all make believe it’s just the flu.

Ahhh, flare and flu: two sides of the same coin. The flare side is the one you share with your flare circle and the flu side is the one you share with everyone else. Some days the sheer illogic of it gets to you when you realize you’ve probably told the other person you have a flu, tummy bug, migraine or pulled muscle (which was almost certainly heroically earned at the gym instead of getting out of bed) an average of some 180 days out of 365, and likely more often.

After some time, you feel like a bit of a liar. It’s not that you’re not sick, but you really haven’t had the flu for 180 days. You’re in a flare. You can’t go to bed and sweat it out (you could do a good approximation if fever is a common symptom of your illness), and bounce out of bed in two days’ time as much as you want to, besides there’s that nasty pulled muscle to attend to! The doctor can’t give you a pill, an ointment or an anti-inflammatory to fix you.

You can’t say ‘flare’, so you end up with a load of rather nice (but meaningless) euphemisms for ‘flare’. You’re damned if you explain and damned if you don’t, so you rely on what humans have relied on all their lives: dancing around the truth. I feel like where the people outside my flare circle are concerned (and that’s a lot of people) I’m in a permanent ‘Don’t Ask, Don’t Tell’ zone.

The euphemisms for ‘flare’ that I’ve used personally include:

–       I have the flu.
–       I’m just getting over the flu.
–       I must have a bit of a bug.
–       I have a tummy bug.
–       I’m just getting over a tummy bug.
–       I’m under the weather.
–       I’ve been out of commission this week.
–       I’ve felt so nauseous lately. I must have the stomach flu.
–       I have a migraine.
–       I’m a bit tired.
–       I’m not feeling like myself today.
–       I’m not feeling too good.
–       I’m just having one of those days.
–       I’m just having a rough day.

What would I really like to say?

–       I’m in a flare.
–       No, it’s not the flu that’s been going around. (Unfair, when we’ve pretty much conditioned everyone to understand that a flare is like a permanent flu.)
–       No, I haven’t done ‘X’ yet because I was bedridden half the week. Sure, I’ll try to do it tomorrow, but don’t hold your breath – it’ll be more like next week.
–       I feel like Pele has stabbed me with his steel-spiked soccer shoes.
–       Someone came by to borrow a cup of sugar, but took all my energy with them.
–       Could you repeat that about 10 times please because my mind is lost in the Bog of Eternal Fog?
–       I’m okay as long as okay is how you feel when someone pierces your joints with pins and pummels the crap out of your muscles.
–       Please repeat that as I slept 3 hours last night and I’m not sure whether you’re real or a figment of my psychotic imagination.
–       Please send me an email. I’ll get back to you the next time my mind is in my office or my body – whichever comes first.

How about you? Do you tell people ‘white lies’ or claim a more ‘normal’ symptom to cover up the fact that you’re in a flare? How do you feel about it? What would you really like to say to them? Can you think of a way to be authentic to yourself without having to disown everyone outside your flare circle? I’d love to hear from you.

Blessings,
Jane