Thread by @asymmetricinfo

So today I wrote for the first time about something weird that happened to me a while back: I got a chronic mystery ailment that made me dizzy and nauseated.

https://twitter.com/PostOpinions/status/1452704698348318727

I'm not even sure exactly how many years I was sick for, because it crept up so slowly. At first I was just a little--off. Tightness in my chest, slightly faint, nauseated. Easily confused with low blood sugar or silent migraines, both of which I'd suffered from time to time.

Over the years, it steadily got worse: I never passed out but I came about as close as you can without losing consciousness, including sometimes falling to the ground.

During the ebola scare, I captivated a whole plane by staggering to my seat, almost retching and on the verge of passing out. When I finally recovered enough to look up, every single person was staring at me.

I lied and told them I'd accidentally taken a double dose of BP meds.

Then there was the time I gave a book talk at Busboys and Poets while sitting on the edge of the stage. I passed it off as having a bad back. (Which, actually, I do). The truth is, if I'd stayed standing any longer, I would have fallen over.

This is something that has actually happened to me, and embarassingly, several times when I met people for drinks. Had a second drink, stood up, and bam! hit the floor. Of course it looked like I'd spent the day pregaming.

This impression was made worse by the fact that when I had these attacks, I became monomaniacally obsessed with getting home so I could lie down. I would get very ill, and abruptly depart with a minimum of explanation.

Apologies to anyone I did this to.

Also, apologies to anyone I declined to hang out with, or canceled on, because I was afraid to go out. And apologies to anyone who I told I had to sit down because of my back--actually, I had to sit down because I was afraid I was about to become a humiliating public spectacle.

I'm not proud of this, I just couldn't bring myself to say that I had done this to myself with my extraordinarily sedentary lifestyle, or that I was having panic attacks, the two explanations I'd gotten from doctors.

By 2018, I'd basically become semi-reclusive, because I was so afraid of being in a public place where things might go wrong. That's a reality for a lot of people with chronic illness--they withdraw rather than endlessly explain.

To answer some of the questions folks are asking: yup, they tested to see if I had any *other* symptoms of a brain tumor. (I didn't). I had an EKG the one time I went to the ER. (Normal). They measured my blood pressure (normal bordering on high--I have congenital hypertension).

I probably should have been more proactive, and really tried to run it down. The truth is I was embarrassed, because it is majorly unfun to have a doctor suggest you're lazy and/or having panic attacks and/or having psychosomatic symptoms.

Also, I could still do my job, so it wasn't like this was a matter of keeping the lights on. So I just accepted that it was my fault, and tried to talk myself out of it.

This did not work.

I imagine many of you reading this with the kind of pity mixed with contempt I've seen offered to other people who have--or think they have--mystery ailments: fibromyalgia, chronic fatigue, chronic Lyme, even "long covid". Sad people who have physicalized their neuroses, amirite?

Exhibit A of the aforementioned disdain for anyone who develops a sickness doctors can't diagnose.

Right, so here's the fun part: my "mystery ailment", my modern day version of "feminine hysteria", the physical embodiment of my overwrought anxieties and effete lifestyle, turned out to be boringly real, and completely unmysterious.

I'm fine now.

So wheel back through the years to sometime around 2010, when I need a physical for some paperwork, but don't have a PCP to give me one, because it's hard to find a PCP taking new patients in well-insured Washington.

I go to an urgent care place.

The urgent care place tells me my BP came in high and they want me to add another drug to my diuretic. Unbeknownst to me, this drug will, over time, start causing my BP to occasionally drop to disastrously low levels.

Now, if I'd had a regular PCP, maybe they would have been monitoring this, but I didn't. When I finally got one, several years later, they just continued the two drugs I was on.

When I tenatively mention that I'm having these weird attacks, no one connects them.

And I didn't connect them because as I say, they started slow, and were at first easily confused with either low blood sugar, or silent migraines, both of which I occasionally suffer from. It's only in the fullness of years that I get the full spectrum of exciting symptoms.

IN fact the only reason that they were EVER connected is that I switched to Kaiser Permanente, an HMO, and they like you to meet your doctor. So I go in, and as I recall, my BP was a little high at first--normal for me, if I've just sat down. Nurse said they'd take it again.

Nurse looks up with a very funny expression. "It's 80/40. Do you have low blood pressure?"

"No, I have high blood pressure."

Suddenly there are a lot of people in the room, and someone is asking if I feel dizzy.

"Why yes," I said, and realized I was in the early stages of an attack. I think I said something like that, but they were all about ordering a gurney so they can get me downstairs and run an IV.

For the first time, i'm more chill than my doctors. It's an attack, I'm sitting down, it's fine.

In fact, when the gurney was delayed, I said "I can walk". I knew if it got bad, I could just sit down.

Nurse looks at me like I'm crazy. "No," she said. "You can't."

They run an IV, my BP pops back up into normal range, and eventually a doctor comes in and we do some spelunking in my medical history.

"Why are you on [name of drug]?" she asks.

"I don't know, some urgent care doc put me on it years ago."

And finally, I know what's wrong.

We take me off the drug. It is a miracle cure. That was the last such attack I ever had.

So why am I telling you this story? To blame the health system? No. I should have pushed harder to figure out what was wrong instead of timidly accepting the rushed verdict of a handful of doctors who saw me for ten minutes each.

The occasion was the publication of "The Deep Places", the @DouthatNYT memoir of his struggle with chronic lyme--a disease doctors doubt exist.

And maybe it doesn't; I see both sides. But here's what I also see: how easy it is to write off pain you can't feel.

Check out this dude, who doesn't know me, and doesn't even wait for the end of the story before he diagnoses me as a hypochondriac or self-panicker who has let her neuroses infect her covid-19 coverage.

https://twitter.com/asymmetricinfo/status/1452719376369659912

(Always read the whole thing before opining.)

This is super, super common. Before I got sick, I myself was among those who dismissed the whole family of vague, hard-to-diagnose ailments as figments of upper-middle-class imaginations.

Being sick taught me a modicum of charity, and how much I don't know.

Because here's the thing: my situation wasn't even a hard one--you can see commenters asking me about hypotension. I think I asked myself about it more than once, but my BP was always normal-to-a-mite-high *by the time a doctor saw me*.

The only way to see it happening was to be there in the acute phase of an attack, which never lasted long enough to be visible when I got to the doctor's office--or even when I got home to measure my BP.

Detecting it would have required me to walk around with a blood pressure monitor slung on my hip, cowboy style, and I'm afraid I didn't think of that.

Anyway, I was talking about Ross's memoir with an acquaintance, who pronounced themselves a chronic Lyme skeptic, because it can't be measured. I reminded them about my own ailment, and they said "But that was real. You could see it on the machine."

And sure, yes, you could--but it was a complete fluke that anyone ever did. I didn't go to the doctor because I was feeling ill. I went because I was supposed to get a checkup. If I'd scheduled the appointment an hour earlier, I'd probably still be taking that drug, and suffering

There are good reasons that doctors like objective criteria over guessing from symptoms. The problem is that limits treatment to the things we happen to be able to measure, which is not all things that go wrong with the human body.

So while I can't swear any of the chronic mystery conditions are real, I am also unwilling to confidently assert that they aren't, or to reason backwards from the psychological state of the patients--because let me tell you, having a mystery disease makes you pretty anxious.

And if I could go back and do it over again, I'd be one of the patients people make fun of--the desperate ones, stumbling from doctor to doctor, willing to do anything to get better--instead of a nice, docile patient who accepted the first verdict I got and tried to live with it.

Anyway, if you made it this far, three things:

1) Buy Ross's book, which is great: amazon.com/s?k=the+deep+p…

2) Read the article, which is not as good as the book, but better edited than this thread: washingtonpost.com/opinions/2021/…

3) If you know someone with a mystery ailment, be kind.