My workplace has been STELLAR about all of this. Just putting that on record. They’ve been very accommodating about the time off, and there are a metric FUCKTON of resources available to me, including generous disability packages. And one benefit I just learned about was something called a Medical Case Worker – someone to work closely with me and act as liaison between my job and my doctor to make sure that I’m getting the assistance I need to be able to continue to do my job. I don’t actually need anything yet, but I’m trying to get everything figured out early so I can easily manage changes as they come up and not have to scramble.
I met with my medical case worker over the phone today. She was a very chirpy woman, she briefly explained who she is, and what she can provide, and asked me if I could tell her a little bit about why I’m contacting her.
“I’m not sure how much you want to know,” I told her, since there are all kinds of corporate things everywhere that carry DO NOT DIVULGE PERSONAL INFORMATION warnings on forms and everything. I don’t care who knows what, but I could see how an unsavory management type could use this against me.
She explained cheerfully that I don’t have to tell her anything I don’t want to, but she’ll be working closely with my doctor to arrange accommodations as needed, so she’ll need at least the basics.
“Ah. Okay then. Well, I’ve been diagnosed with Lou Gehrig’s Disease.”
I could hear the change in her over the phone. It was a moment before she spoke, and when she did, it was a human being on the other end and not SmartyCo Medical Case Worker. “…I’m so sorry.”
And I let out a breath I didn’t know I’d been holding. I’ve come to realize over the last month that I really, really prefer to tell people when they already know what ALS is. There is this intense relief that comes over me when I break the news of my diagnosis to someone, who knows EXACTLY what that diagnosis means. I don’t have to have that typical awkward conversation:
“I have ALS.”
“Oh! I’ve heard of that. But I don’t know much about it. Is it pretty bad?”
“Well it means I have a terminal disease, so yeah, that’s pretty bad.”
And then they feel horrible and stupid, and I feel like a heel. But when someone already knows what it is, what it means, then the sympathy happens organically, no pressure, just a gentle “I’m sorry” and we can move on from there. They know exactly what I mean, they’re allowed to express how genuinely sorry they are; it’s a short intimate exchange and then we can continue. Much preferable to a stilted conversation with half-explanations while my awkward social situations allergy flares up and my brain wants to claw out of my nose to get out of having to have this conversation.
But as it was, I said a grateful “thank you” and we continued to talk about what I need, and what’s available to me without things going all squirrelly. And I was very relieved about that. It makes things so so so much easier.
Which is another reason why I really need to be more active with raising awareness about this fucking disease.