The past two months have been a bit more introspective than ever (if that’s even possible), as I’ve debated with myself and with various professionals about the wisdom of getting tested for Huntington’s. My argument has always been that the likelihood that I have the disorder is slim since I do not have the required family history and my symptoms only kinda-sorta fit. Plus, I was told that the test woud not be covered by my insurance and that it would be a $2K hit to my pocket to get it done. But none of my doctors have relented. I need to get the test done, they say.
So I decided I would follow their recommendations, and in doing so found out that my insurer would indeed cover the test (and that it cost more like $500 instead of $2K). I haven’t submitted the test kit to the company yet, but I will this week. I have a visit with yet another Neurological Expert in a few months, and I want everything squared away before I go to him.
I do not think I have Huntington’s, as I said. But I do think I have something. I’m not a believer in self-diagnosis, but it’s looking to me that I may (just may) have Parkinson’s. The only symptom that I do not have is resting tremor, but this apparently isn’t too unusual. But the other cardinal symptoms and some of the ancillary ones…yes.
I’m oddly stoic about the whole thing. Perhaps it’s because I’ve known for a while that something wasn’t right, so I’ve had a long time to work out all the scenarios. Also, if I do get the diagnosis (and I hope I get it right then and there, and don’t have to do wait another three months or go to another expert), at least I can stop on this long-ass and expensive journey of doctors’visits. After awhile, you get exhausted telling doctors what’s up…you start thinking maybe you’re exaggerating things or even making things up out of whole-cloth when they can’t tell you anything, or when the drugs they prescribe don’t work. You start thinking, “Well, it’s not like I’m in pain. It’s not like I can’t function. Maybe I just need to get over myself.” But then you’re reminded that you don’t live in the world alone…that people will eventually notice you limping or moving funny and will want to know why. Having an answer to tell them would be nice. So you continue on the search for answers, even if you don’t really care that much anymore. Well, that’s how it’s been for me…I shouldn’t say “you”.
So let’s say I do have Parkinson’s. Inevitably, someone will ask me a question and I will have to tell them. Everyone at work will know, even if I don’t make a big announcement about it. People who I don’t even work with will eventually find out. I don’t care about this. It’s the stuff that will inevitably come afterwards.
“You’re so strong. You’re an inspiration.”
“I don’t see how you keep on. It’s amazing.”
“You never complain and you always seem so positive.”
“How are you feeling today?”
“If you need anything, let me know.”
“Can you handle this?”
“I’m worried about you, living all alone.”
Simply, I’m concerned that people will be way more wrapped up in this diagnosis–that I may or may not have–than I will be. And eventually, their well-intentioned words will bug the hell out of me and turn me into an evil bitch. I will understand where they are coming from…that sometimes it’s easier to say something trite and meaningless when you’re in the midst of someone with a serious condition rather than just to talk to that person like you always have. But it will still annoy me, and I won’t know what to do to get them to leave me alone.
If you have a chronic condition, particularly one that is hard to “miss”, how do you handle overly nice people? If someone says, “You’re so strong. I don’t know how you handle it” what do you say? “Thank you”? Somehow, that doesn’t seem right but I don’t know what else you could say that wouldn’t come out mean.