I'm sorry you're living with my nightmare
September 22, 2010 1:56 PM Subscribe
Life with (and without) Huntington's.
posted by anonymous to health & fitness (15 answers total) 5 users marked this as a favorite
A very close friend recently had a parent diagnosed with Huntington's disease, and is now running a wide gamut of emotions concerning not only the parent's prognosis but their own health and reproductive future as well. I find myself talking with this friend quite a bit about the situation not only because she has things she needs to get off her chest but because I have Huntington's disease in my family line as well. (My grandmother died from it in her early seventies, and an uncle drowned several years after his diagnosis as symptoms were beginning to severely worsen.)
My own parent is old enough now, without showing symptoms, that I think she, me, and my siblings are probably in the clear. (My mom turns 59 this month. Her mother was diagnosed around 60 after having shown symptoms for several years, and her older brother was diagnosed in his late 40s or early 50s.) But having this genetic nightmare I've been worrying over since I was a young teenager now actually happen -- to my friend -- has made me preoccupied with the disease and the possibility that my mother may suddenly get sick after all. I've been having obsessive thoughts about my mother developing symptoms, as well as imagining my own diagnosis fifteen or twenty years in the future (which usually involves thoughts of arranging my own suicide twenty-five or thirty years in the future) as well as fretting like I did when I was younger over any involuntary shudder or possible tic. I'm definitely surveiling my mother for symptoms like clumsiness, shaking, balance issues, irrationality, and slurred speech, and though I haven't seen anything I find myself irrationally preoccupied with the idea that her habit of holding her hands together (which I've just noticed, and which may be new) is to actually keep them from shaking. I'm worrying again -- a few months into trying to have a baby -- about having kids myself. And I'm worrying about the children of my uncle in their thirties, some of whom will likely start to get sick from Huntington's in just the next few years.
On the one hand, I'm a source of useful information for my friend about Huntington's, as her grandmother died before showing any symptoms at all and the parent/aunt/uncle generation is only just getting diagnosed. (They really don't have much family memory about what HD is like or how it progresses.) I'm also a good sounding board for her fears and anxieties because I have such a similar experience, and because I know a little bit about practical matters like insurance, pre-existing condition exclusions, disability insurance, and the need for long-term care. But by the same token I feel like I'm a *terrible* source of information, because having grown up in a family in which memory of the disease goes back several generations everything I have to say about Huntington's feels completely hopeless, bleak, and terrible. I worry that I'll inject my own lifelong anxieties into this situation and make things worse for my friend. (I'm trying very hard not to do this, and she hasn't said I'm doing anything wrong. I find I mostly unload these anxieties on my wife instead, who is very understanding and generally wonderful about all this.) The only "good" things to say -- maybe you don't have it, maybe they'll develop effective treatments soon -- seem completely hollow.
I'm looking for help in what I should and shouldn't say to my friend -- resources to point her to, ways of coping with what is happening to her and her parent and the children she doesn't have yet but wants. I know she's thinking of getting tested, but whether she does or not she has a lot of possible futures to contend with, and I want to do what I can to help to help her through this.
But I'm also looking for ways that I can process what is happening to my friend without experiencing it as if it were happening to me. It's probably part "survivor's guilt" and part "maybe I'm not actually out of the woods yet," but either way my renewed preoccupation with HD is definitely becoming a distraction for me. How can I go back to thinking I dodged the bullet? Given my mother's age and lack of symptoms I feel like spending $1,000 I don't have to test myself for a disease I almost certainly don't have would be completely irrational -- and of course there's always the chance that I'd be spending $1,000 to find out I (and my mother) do have it after all.
Thanks for reading this and for any suggestions you may have for coping with a family history of degenerative disease, especially Huntington's.