The Conversation I Probably Haven’t Had With You

I’m finding that there’s really no easy way to tell people you’ve been diagnosed with an incurable disease. Shit like that will stop a normal, human conversation dead in its tracks. And anyway, it’s nearly impossible to casually work it into a chat. No smooth segue. “Can you believe all this Trump insanity? Oh, and speaking of things that massively suck…”

So, here comes the cold water: I’ve been diagnosed with multiple sclerosis.

It’s at this point in face-to-face conversations where I usually get reactions that are some version of, “Oh no/I’m so sorry/That DOES massively suck” and the like. Then the initial expression of sympathy is often followed by a kind of uncomfortable look that says, “I’ve heard of MS, but I’m not exactly sure what it is or what this means.”

I get it. That’s the camp I was in myself until the MS Fairy decided to leave her awful treat under my pillow and I was forced to do a lot of learning really quickly. (Need a lesson yourself? It’s okay. I got you.)

It all started with me telling my doctor about a weird thing that had started happening with my neck. After that came three nervous months of expensive tests and inconclusive doctor visits, but mostly just waiting, before I was finally diagnosed in late February. At the end of all that waiting, I was just relieved to have an answer, to know what was going on (and I actually got an answer relatively quickly; from what I’ve read, some people go years without a definitive diagnosis). I think most people would agree that knowing is better than wondering. It just sucks when knowing means knowing you’re sick.

So yeah, where was I? Big life change, hard to work into conversations… Of course I have told some people. Immediate family, obviously. Some friends. Other friends have learned about my MS through the friends that I’ve told. In the first few days post-diagnosis, a few people who made the innocent mistake of asking me that should-be harmless question, “How are you doing?” found themselves caught in the unfortunate crossfire of truth and timing; I couldn’t honestly answer with, “Fine, how are you?” (I’m garbage when it comes to masking what I’m feeling. Heart, meet sleeve.) So, those people got the news, whether they really wanted it or not.

But that left a lot of people (some of whom are reading this now) whom I didn’t know how or when to tell. Social media makes it really easy to announce stuff to your wider circles of comrades, but I didn’t really want to do that. First of all, it breaks one of my Facebook Commandments , and aside from that, this isn’t exactly sharing news of an exciting new job or a bun in the oven. No photos of me biting into a mystery cupcake to reveal blue or pink frosting inside. What color frosting tells you, “Congrats! Your central nervous system is broken.” #worstcupcakeever

Which brings us here. Even before the MS diagnosis was confirmed, I was already thinking about starting a blog. I did a whole lotta contemplating during those months of waiting for a diagnosis, and I realized that, if it did end up being MS, a blog would be a good way to share information with people. As I see it, there are 3 main reasons why:

1. It’s efficient. Once I did start having the post-diagnosis conversations with people, I found myself repeating the same version of the story over and over again. Which is fine, it’s important news to share. But it also gets draining. And I’m sure I’ll still have those conversations (again, totally fine), but at least the story, any updates, my rambling thoughts and observations, etc. will also be living in one place for anyone I don’t have a chance to tell in person.
2. It lets you off the hook. Look, I get it. I have been on the receiving end of the “So, I have something to tell you…yadda yadda yadda*…[disease.]” conversations many times. And many times, I just haven’t known how to respond. This is especially true if I don’t know a lot about the revealed disease. No one likes admitting that they don’t know a lot (or anything) about something, so I’m assuming that a lot of the people in my life are in a similar boat. So, when I have the conversation with you face to face and you don’t know what to say, it’s awkward for both of us. Telling you about things here allows you to take it all in at your pace, then privately Wikipedia the shit out of MS, and then we can all get on with our lives and have a good laugh about it next time we’re at a barbecue together.
   
   (**Please don’t take my “yaddas” as me trivializing the weight of conversations like this. I’m just trying to get to the point. This post is too goddamn long already.)
3. I’m considerably better at writing than I am at actual, personal interaction. A blog does me a real solid by giving me the chance to take as long as I need to think about what I want to say rather than blurting out whatever ill-formed drivel happens to be floating around my noggin at that moment, and get it right (or right-ish). You’re welcome.

So there you have it.

I do have things to say about non-MS topics from time to time too, so I anticipate that this blog won’t end up being solely focused on my MS. I don’t plan on my life being solely focused on my MS, so why should this be? Writing is a great outlet, cheap therapy, rigorous mental exercise, and something I truly enjoy, so this endeavor will be good for me. I hope it will be good (or good-ish) for you too.