When my kids were little, sometimes we’d be out and people would congratulate me on what well-behaved children I had. My children did not love my usual response: “They’re normal kids. They just know that we’re going home if they don’t behave.”
It gives the impression of amazingly well-trained children if, week after week, people at church or restaurants or other public places only see your kids when they have their act together. We didn’t do anything dire, by the way, if the kids started acting up, we just made our exit ASAP, lived to try again another day.
(For this reason, I did not attend daily Mass for many years while my children were too numerous and rambunctious to reliably sit through Mass without splashing in the holy water. Actual problem we had. Those kids liked water.)
For a lot of people with chronic illness, public life is kinda like that: But you don’t look sick. At all. In fact, you seem to be unusually healthy.
Speaking for myself, the answer is a big fat yes. In many ways, I am unusually healthy, especially when compared to other people my age. I know very few people who are more particular about their diet than I am. I know many people who are stronger or fitter than I am, but not many who operate so close to their maximum athletic potential as I as generally do.* And, honestly, I’m just lucky. I’ve got a kind of disease that is disabling in a different way than other more frailty-inducing diseases are.
Also: You don’t see me at my worst, because when I’m at my worst, I stay home.
I wanted to share that because I ran into a local friend last week whom I hadn’t seen in a long time, and he joked about wondering whether my husband had buried my body in the basement and just wasn’t talking. Real answer is that I’d been out sick from Mass, got anointed last spring actually, and also since being able to return to church, I’ve been attending a different service with a child who is old enough to begin making active decisions about the practice of her faith, but not old enough to drive herself to church.
So we chatted a little, and I was very energetic and talkative, because: (a) I just was, I’m not always completely incapacitated, it really does pay off to do what you can to keep up your health generally even if you are dealing with a serious illness, and (b) it was such a pleasure to reconnect with one of my favorite families, people who are always a ton of fun to talk to.
Anyway, he apparently subscribed to Riparians but didn’t know about Patheos, so today I put up a little “where to find me” note over there. It includes what you should do if you want to book a speaking gig with me.
All of this message is brought to you by Dysautonomia Awareness Month. Two posts of note from the archives, and you can count yourself more-aware:
Another experience I’d like to share, that ties into the Weird Ways Dysautonomia presents: This spring while I was at my sickest (to date, and I’ve also enjoy periods of excellent health — it’s a relapsing and remitting disorder, in my case) I was getting alarmingly low readings on the pulse oximeter, but which went right back up to 100 if I got up and walked around.
I don’t have POTS, which is the most well-known of the idiopathic dysautonomias common to otherwise-healthy middle-aged women, but in doing some reading, sure enough low pulse-ox readings due to blood pooling in the extremities is a thing.
Soo . . . I would be the person who looks and feels ready to keel over when standing up during Mass after sitting in perfect stillness for ten or twenty minutes, but who feels fantastic sprinting across the parking lot afterwards. Not faking. Love Jesus, love the Mass. I’m sorry that your heart or lung condition works the opposite (yes, I do prefer my problem to yours), and therefore you are confused. Wish my body functioned well in all modes, but it doesn’t.
For non-POTS dysautonomia information, this guy has a mind-dump on his website. No idea why his textbook is so expensive right now, looks like a pricing anomaly.
If you are wondering why I was so firm on shutting down the “Long COVID is a hoax” thing, it’s because when I first read about Long Covid in the fall of 2020, I immediately recognized from the first-hand accounts the symptoms of post-viral autonomic dysfunction. Not gonna lie: I was glad it was affecting previously-athletic, healthy, young, successful doctors and nurses.
Why would I think such a terrible thing?
Because the medical establishment usually writes off patients who present with disorders the medical establishment does not yet understand. Heaven help the check-out clerk who gets long COVID; at least mysteriously-ill doctors and nurses have some vague hope of maybe being credible with their colleagues?
Here is some reading on COVID and autonomic dysfunction:
- Autonomic dysfunction following COVID-19 infection: an early experience
- Clinical characterization of dysautonomia in long COVID-19 patients
- Long-COVID Autonomic Dysfunction (scroll down on that page for links)
I suspect that in a few years it will be fairly common for people with other causes of idiopathic autonomic dysfunction to be misdiagnosed with post-COVID syndrome.
*Neither of those traits has much to do with virtue. I would be more relaxed about what I eat, except that dietary interventions are one of the few tools I have at my disposal, so there we are. I’ve always enjoyed pushing myself athletically, so the desire for physical activity is inherent, not cultivated. Also I have a disease which is characterized by muscle pain at rest, relieved by motion, so when I’m faring poorly I have a constant motivation to fidget. It really does give you an edge.
(Updated to also note: From a pure time-commitment perspective, it is much easier to exercise to one’s physical limit when you’ve got a couple factors that set the ceiling very, very low, and therefore you can hit your max just going about daily life. Normal people, in contrast, simply don’t have that much free time for additional workouts, unless they’re making their living doing something like “pyramid building” or “subsistence farmer, no mechanization” or what have you. Seriously, don’t get defensive, all you athletes who are indeed sacrificing and pushing yourselves, and it’s nothing to be dismissed, whatsoever. Your efforts are worth it, keep going. Please. Only point above was that someone who is debilitatingly ill can still be fairly physically fit, IF the comparison is to other people with completely different serious illnesses which create far worse limits.)