I’ve written before about the series of events that ended in me falling ill, but one thing I haven’t told you about is the transition after that – the transition from being a healthy person to being a chronicially ill person, and the things I had to learn along the way.

So let’s begin this way: Once upon a time, I was really, really healthy – right up until I wasn’t.

When I fell ill in 2004, I’d never been sick with more than just your average cold or flu. Because of this, when my alarming symptoms started popping up, I had no idea what to do about them. I went to my gyno – my only doctor – who quickly gave me the brush-off because my symptoms didn’t seem to have anything to do with my reproductive organs. I thought it was her job to point me in the right direction, but she obviously didn’t think so. Eventually I found a GP near our house, and she started running tests, and then began sending me on referrals.

As I started to make the rounds of doctors, it never occurred to me that I might be dealing with the beginning of a chronic illness, not only because I’d always been healthy, but because my personality had long been particularly tied up with my devotion to healthy living. I’d been a vegetarian since my teens, had been following a whole-foods diet for many years, and was up religiously most days of the week before dawn to strap on my sneakers and run a few miles. Now as my health started falling apart, more than one person who watched me dragging myself through my days puzzled over the strangeness of it, saying something to the effect of, “This shouldn’t be happening to you, of all people!” I certainly agreed with them, but it didn’t change the fact that it was.

My symptoms were so weird, so sudden, and so dramatic that I thought there must be a simple explanation. I expected I would go to see some doctors, we would do some tests, the cause would be found, I would be given the proper treatment, I would undergo it, it would be effective, and I would go back to being healthy. That was the only scheme of interaction with medicine I really had for myself, despite the fact that I was married to someone with a chronic illness. (When we said our wedding vows in 2001, I thought I already knew who was going to be the sickness and who the health!)

One day a few months into my illness, Chimp and I sat in the office of my endocrinologist, waiting to hear the results of the round of testing he’d done. In our first meeting with him, based on the prominent pain I was having radiating down the front of my neck on either side of my windpipe, he theorized I was suffering from subacute thyroiditis. He seemed very confident that that was the source of the trouble. It made perfect sense, as I had just about every classic symptom – and he said if it was that, it was likely to go away on its own. Now, opening my chart to the test results, he looked over his glasses at me.

“Based on the testing we did, I’m sorry to say that I have no endocrinological explanation for your symptoms.”

Well, consider the other shoe dropped. Subacute thyroiditis had seemed like a sure thing. Now I was thrust back into uncertainty and the steadily increasing possibility that whatever I had would not be an easy fix. As I counted the duration of the tiredness from days to weeks, and then weeks to months, as more and more test results came back with nothing obviously amiss, I found myself thrust into a new experience: Learning to be an ill person.

It might sound ridiculous to say that you have to learn how to be ill, but you do.

There are all sorts of things I had never had to do or know before I started my intimate encounter with the healthcare system. Having been well all my life, there had been no need to know them. But once you’re sick, there are certain things that are useful to learn in order to be sick successfully. And by being sick successfully I don’t mean getting well, but learning to both manage and deal with your interactions with the health care system.

Among the things that I found I had to know or do:

• Figure out the meaning behind all the boxes your doctor checked on the lab slip. In the process, scare yourself to death reading about illnesses associated with each test.
• For fasting blood tests, become adept at the calculus of how long you can go without food as compared to how long the lines are likely to be at the phlebotomy lab.
• Find out which labs have places to let you lie down for the draw so you don’t have to sit up for the test and then lie down involuntarily when they stick you.
• Decipher the printouts that give your results, which will inevitably have developed hieroglyphic characters through some combination of multiple faxings and copyings.
• Finagle short-notice appointments when a new symptom pops up, as if it helps. Learning the office staff’s names and sending treats at the holidays aids in this.
• Become an expert at “new patient” forms, with the exception of always missing the back of one page that doesn’t seem like it should have a back side.
• Request charts be forwarded all over creation, and always call before your appointment to be sure they arrived, because there is an unobserved black hole in 50% of medical offices.
• Because any worrying symptom will inevitably occur on a Friday at 5:05 p.m. before a holiday weekend, when that happens, have the on-call doctor paged. That’s what having a doctor on-call is for. Really.
• Write down your questions in advance, because the minute you’re engaged in conversation, the brain fog will suddenly descend to zero visibility.
• Cultivate the skill of staring at waiting room fish tanks…enough that you begin to wonder whether you’re entertaining the fish just as much as they are you.
• Avoid touching anything in the waiting room. Sick people sit there, you know.
• Condense your tale of woe enough that you can get it all out before the doctor tunes out and starts talking over you.
• Realize that when you encounter Dr. Asshole (and if you are sick for any length of time, you will meet Dr. Asshole, probably more than once, and unfortunately said physician will not be helpfully labeled on his or her coat as such), that you do not have to stay her patient, because there are plenty of Dr. Non-Assholes out there.

Besides all that day-to-day stuff, the thing that surprised me the most to learn was how different medicine is than how it seems from the outside. I had never seeen so many doctors in such quick succession, and besides a couple of dermatologists, I’d never really seen a specialist before.

Doctors have to know thousands of things, and as talented as they are, they are hampered by the limits of the human mind; they can’t possibly stay up to date on all the developments in every ailment. The more garden-variety your thing is (and the more concrete it is, symptoms- and testing-wise) the easier a time you’ll have getting it diagnosed. On the other hand, if your thing is not a common thing that doesn’t have a straightforward test, the more likely it is that you won’t quickly get the help you need.

Specialists, I found out to my dismay, are not the sleuthing Dr. Houses of the popular imagination. They know a set of things in more depth than a GP, but in daily practice, they have, let’s say, half a dozen or so things they focus on treating and which they know a great deal about. But if your thing is not one of those half-dozen things, they don’t generally say, “Yes, let’s dig in here; I’m perfectly happy to spend my limited time investigating something that’s out of my depth.” Nope. You’re basically bounced back out on the street.

When none of my test results came back abnormal and I was still exhausted months later, I finally did get officially diagnosed (my GP had said “CFS” aloud by four months, and formally diagnosed me after six). But I didn’t know how to find a specialist in my illness, and I didn’t even know what specialty my illness fit into. But that turned out to be a trick question, because ME/CFS doesn’t really have a home among the specialties. I’ve found that people specializing in it are a scattershot bunch: rheumatology, endocrinology, and plain old internal medicine, mostly. And there’s a bit of circular reasoning in play here: When you have a thing that doesn’t fit into any of the specialties, it doesn’t get the kind of respect it deserves, sadly, because it doesn’t belong to any of the specialties, and you’re basically SOL.

As I started reading about the illness it was becoming increasingly clear that I had, it also became increasingly clear that there was no known cause, and no known cure – only “management,” which is sort of a euphemism for “You’re superficially being ‘treated,’ but in truth we’ll be of no actual help to you; you’ll either get better or you won’t on your own, and the best you’ll get from us is sympathy.”

If I’d found myself in a medical system that had a place for me, or that took my diagnosis seriously, or anything like a test, a treatment, or at the very least some useful advice as to how not to make myself worse, I might not have had to learn all of the above. And if I hadn’t had to engage in that exercise in futility, I wonder how much different my outcome to now – or the outcome of any of the millions of people diagnosed before or after me, continuing right up to the present moment – would have been.