My boyfriend is getting his test results tomorrow. I have been his only support thru the entire testing process. While I truly believe he will handle
a "positive" result pretty well, I was wondering if anyone has any advice for me? What should I say? What shouldn't I say? What is the best type
support I can provide?
Thanks!!

First, I want to say I hope that your boyfriend gets good news! I'm not sure there is really much you can say. Just being there to support him says a lot. Please let us know how everything turns out.

I usually just respond "Well that sucks." Hugs are always good. It's never a good idea to try to 'make it better' by saying things like, well none of know our future, I could get hit by a truck tomorrow (a phrase which drives the HD community crazy). Basically I followed my ex's lead about what he wanted to talk about. I did say, "There's a lot of hope for the future and we are not going down without a fight." (still true 13 year later and he's still hoping to benefit from RNAi). I asked him what he would like to do for the rest of the day, if there was anything that might help take his mind off the news and lift his spirits and he said he would like to watch an action film and eat ice cream. So we did.

The advice already given is great. There's nothing like the hope that Marsha alludes to. No matter what it sounds like he has time on his side for one of the MANY things in the works to truly change what it means to have HD.

But even with today's prognosis for HD, those WITH HD have told others going through testing, that "No matter what the results are, at least you never have to go through testing again." I think this implies that the testing and a fresh positive result are really the worst part. Things actually do get better from there. He has lots of quality life left to live, even if he is symptomatic; he has even more time if he's not symptomatic.

Another thing that gave me some comfort was that testing doesn't actually change what's coming in your life. But it DOES change how you can prepare for what's expected to come in your life (and empower you to just maybe have some positive impact).

We hope he's negative, but if the results are positive, just allow yourselves to be really bummed out for a while, but know things WILL get better.

Wishing you and your boyfriend the best today

Thank you all for the great advice. I am happy to report that he tested negative!!! Negative!!! The doctor said negative!! CAG was 15/16. My heart is breaking for all of those that didn't get to hear that word. I'm so emotional right now.....happy for him.....sad for others.......this is such a strange feeling......

What wonderful news! I am so happy for you!!!

Marsha.....I forget to mention that I used your line. When the doctor gave the results, I said "well that sucks!!! We are now back to square one on finding out what's wrong with you". LOL. Thankfully he has a good sense of humor!!!

Don't be sad, and don't feel guilty about good news...if i can have hd, and say that i'm Very happy for you guys, then you can be happy too That is Very good news!



Edited 3 time(s). Last edit at 03/23/2011 04:40PM by Barb.

FANTASTIC NEWS!!!!!! So happy for you both!

Those are BEAUTIFUL numbers! I am so happy for both of you!

What wonderful news! You should celebrate!

WONDERFUL!!!!!
Melissa

GREAT NEWS!!! So happy for you both!

That's wonderful. Fabulous news.

So happy for your great news . db