Living with a chronic illness without giving in to chronic worrying

“Take therefore no thought for the morrow, for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.” — Matthew 6:34

I’ve decided to print this verse on a small card and tape it to my refrigerator, my bathroom mirror, and possibly my forehead.

I need the reminder because myasthenia gravis (MG) has developed a bad habit lately. It shows up uninvited at moments that have nothing to do with it. I’ll be unpacking groceries when a stray thought floats through my busy brain: Did I take my afternoon dose of medication? I’ll be making the bed, and somewhere between the fitted sheet and the pillows, my brain quietly runs a systems check on my eyelids. This happens roughly 400 times a day. MG has become the houseguest who never leaves and insists on commenting from the kitchen doorway, no matter what room I’m in.

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Now, to be fair to MG, some of this vigilance is earned rather than neurotic. Medications really need to be taken on schedule, not whenever I happen to remember. Sometimes, a nap really is the difference between an evening that goes fine and one that doesn’t. And I have learned, through trial and a couple of memorable errors, that talking too much while eating is not a personality quirk for me; it’s a hazard.

Dinner conversation, for a person with MG, occasionally requires the timing of a Swiss watchmaker. Chew, swallow, then deliver the punchline or words of wisdom. Not talking while eating is actual medical advice, not just our mothers’ old table manners. It is genuinely useful to track this stuff. It is also possible to track it 24 hours a day, which is a different problem entirely. That trap is easy to fall into.

There’s good news on the medical front, for what it’s worth to my overactive imagination. I’m encouraged by the treatments in development for MG. Some of these approaches aim to give people more good days with less machinery running in the background of their minds. I keep half an eye on that news, the way you’d keep half an eye on weather reports before a trip. It’s worth knowing, but not worth building a whole day’s mood around it.

Some history is worth letting go

Here’s where, unexpectedly, George Santayana comes in. He wrote, “Those who cannot remember the past are condemned to repeat it.” Santayana is right about history, nations, geopolitical moves, and the mistakes we keep making because we didn’t learn from the last ones. I won’t argue with a Harvard philosopher on his home turf.

But I’d like to file a respectful amendment for personal use only. Sometimes it’s a good idea to forget the past. (Not the medication schedule — keep that memorized. Set reminders on your phone.) I mean the flare-up from three Tuesdays ago. The bad afternoon in February. The running mental highlight reel of every time MG has embarrassed or exhausted or interrupted you.

Santayana was worried about nations doomed to repeat catastrophes. I don’t think he was thinking about a retired teacher in Dallas relitigating a rough Wednesday while folding laundry. Some history is worth studying. Some of it is worth letting go.

MG may have moved into my life, but that doesn’t mean I have to let it take over the living room. It can have a room. Frankly, it’s earned one. It does show up for medical appointments. It insists on rational bedtimes and has opinions about long, chatty dinners. But it doesn’t get to redecorate the whole house. It doesn’t get the kitchen table, or the porch, or that stretch of sidewalk where I stop to admire somebody’s ridiculous, over-the-top Halloween display two months early. Those are still mine.

So here is my working policy going forward, and I offer it to anyone who wants it. Keep the vigilance where it belongs: the pillbox, the calendar, the dinner table, the doctor’s office. Evict it from everywhere else. Or, to put it the way I actually want to put it, in the words that are going up on my refrigerator right next to Matthew: “I have a chronic illness. I refuse to have a chronic conversation with myself about it.”

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.