Letter to my undiagnosed self


Myositis Awareness Month got me thinking…and really, reflecting about a time, before my initial flare-up almost three years ago, when Myositis wasn’t at the forefront of my consciousness—a notion that seems so foreign to me now. I think back to the first time I heard the word “Dermatomyositis”, and actually, it’s a moment I remember very clearly.

I was standing in the hallway of a dermatologist’s office, after weeks of shuttling between appointments with different specialists, when the doctor—who had just gotten off the phone with my rheumatologist—kind of casually said, “Oh, by the way, have you ever heard of Dermatomyositis?” I told her I hadn’t. “Don’t worry, it’s a long, scary-sounding word, and you’ll probably never hear it again, but…”

But, I continued to hear that word.

As it so happened, there would be days, weeks, where it seemed like that word was all I would hear. Months of medications, IVIG, bandaged hands and purple face, and so forth—you guys all know the drill. Months and months where it seemed like the ‘D’ word would define me to degrees to which nothing had ever defined me before.

But what I find myself thinking about now, for the first time, in any detail, is who I was at that moment in the doctor’s office, just before the word “Dermatomyositis” barged its way into my awareness for the first time—how much younger, how much less-informed, how different that guy was from the me that exists today…and what I wish I could tell him that might make the coming journey a little easier.

In honor of Myositis Awareness Month, I figured I’d write a letter to that version of Andy standing there in the doctor’s office, completely unaware of what’s to come. (And while I know this is late, since May was Myositis Awareness month, let’s not forget that since I have Myositis, sometimes I don’t make May until the end of June.)

Dear Andy,

Congratulations! You’re about to get real, real messed up. What’s coming is going to be unlike anything you’ve ever experienced before — certainly anything you had made a plan for . . . but, as your future self, having gone through the looking glass and finally finding myself on the mend (at least for now), I’m here to help.

So, here are a few pieces of advice; some will come easy, some hard, and some you’ll ignore altogether, at your own peril—though, that’s kind of how growing up works, I guess.

  1. It’s time to get honest, with yourself and others, at a fundamental level

Hmmm…while perhaps the most important, this is also the one that you’re gonna struggle with more than anything else. Maybe we better come back to this later.

  1. Learn to ask for (and accept) help

This one’s not gonna be a walk in the park either. The fact of the matter is, you’ve just turned 33, and you’re coming off a life without major medical issues and a pretty steady supply of energy, with no understanding why those conditions have both changed so dramatically in recent months or how to conceive of a life with their permanent absence.

Add to this a fairly unhealthy mixture of arrogance, determination, pride, the belief that you need to “be a man and not trouble other people with your business,” or however you want to put it, and it’s a dangerous recipe for someone who thinks he’s going to proceed through this whole thing still running the show on his terms.

In fact—though it may seem silly now—you’re going to tell people very close to you, “I don’t trust any of you,” on more than one occasion; that’s how much you’re going to cling to the idea that you have to be in charge all the time. So let me say this very carefully: you won’t be able to do this on your own.

Start to acquaint yourself with the prospect of trusting the people with whom you’ve chosen to share your life—and who’ve chosen to share theirs back—since you will not get healthy without letting them be in the driver’s seat from time to time.

And, while they won’t always be perfect—no one is—you’ll find they’ll come through for you in ways you never imagined. So let them help you. In fact, you won’t always be able to determine when you need help, and when you don’t, so ask for help asking for help. Which is especially important, since…

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