“Usual” Does Not Make It “OK”

17 Jun

I’ve had a bad stretch of bad days lately. One of my very least favorite symptoms of my chronic conditions, extreme stomach bloating, has had an excessive tenure this month. In addition, my fibromyalgia has been super active.

20210611_145356.jpgLast weekend, I stayed at a cabin with a human friend of mine. (Amica is always there, of course.) It’s been nearly 3 years since I traveled with another person. It’s really not my thing. One of the difficulties of extended time with another person is I notice my chronic conditions more because someone else is there to notice. This past weekend, my friend witnessed the morbid swelling of my tummy and was wowed, shocked, and sad. (I lightened the mood by drawing on it.)

IMG_5059.jpgWhen what we go through is seen as a snapshot of a moment, it is seen as terrible. The truth is, it is terrible, and it lasts way longer than that moment.

Recently, I got my second COVID-19 vaccination shot, which I’d heard causes some pretty severe reactions. I did have a reaction. I felt that extreme fatigue and dizziness and body aches.

It wasn’t lost on me that these reactions have been a big deal to people. I hear them talking about how awful it was, how difficult it was to be so unable (“disable”) to do their regular daily tasks because of the pain and fatigue. Employers are giving them days off work to go through this. When it’s unusual, when it’s just one or two days, it’s a big deal.

These disabling symptoms, such that are inspiring complaints and granting days off work, are how I feel and live almost every day. It’s how many people with chronic conditions feel and live … and go to work … almost every single day.

A certain experience and expression of illness, when it’s one day, when it’s a moment in time with a witness, gets the attention of being terrible. If we’re “sick” for a day or a few days, the empathy floods in. Friends rally. They bring chicken soup.

That very same experience, when it lasts and lasts, seems to be significantly diminished. There is no rally.

Are we supposed to be used to it?
I never will be.

Are we supposed to be good at coping with it?
I’m always trying, but it’s a lot of work.

Is it just “no big deal” anymore?
As much as I like to think so, it’s still a very big deal.

I have no solution or big inspiration or tips for any of this. I’m just acknowledging the mathematical fallacy that the more common something is, the less terrible it’s supposed to be, when it is just as valid, each day, no matter how many days it lasts.

All I can say is for those going through this, your pain is just as valid as it is for those who experience it only as a passing fluke, and it lasting more days makes it more valid, not less. What I’m trying to say is, you never have to be OK with it.

And for those of you who know us and see us, don’t forget that chicken soup urge. I know it’s a bit much to do it every single day, but once in a while, if you can muster to do as you would do if this were only just one bad day, please do. It means a lot.

Yesterday, I did get chicken soup, and it meant the world.



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