I get my results this week and am feeling very anxious.
Does anyone have any advice on dealing with a positive result? Anyone have a motivating story about how you coped with knowing you carry the HD gene?
I would like to prepare as best I can... Eventually I would like to turn it into a positive experience but for now I'm just feeling scared.
Thanks! I appreciate all the support from the HDYO community.
I think it's important to stay calm as best you can during this 'waiting' period. Have you ever tried meditating? I found it helpful during the time I was going through my testing process. It helped me stay calm, present in the moment, and not let myself get too overwhelmed or ahead of myself. My sister practiced meditation as well when she first got diagnosed with HD and she found it very helpful as well. Hang in there! There is a strong HD community out there who will support you through all of it :)
Not sure if you already got your results back by now...
I hope that you are bringing someone with you, who you can count on for support through the process and afterwards. Do not do it alone:)
I brought my husband with me, and it really helped. Once we went into the room to get the result, which was a positive result then they said sorry and asked if we had any questions (which we didn't, we know what HD is and have lived with it in our family for a long time.. ). we left soon after. It might be helpful for some people to ask for some guidance from those professionals giving your result. I am not sure how much you will remember to be honest, since it is an overwhelming experience whether it is positive or negative.
I was sad and after we left I would just start crying a bit again and then stop.
I have also heard that you should make plans before you go in there, like go for a nice dinner, or maybe a trip or a play. That would be helpful to make a plan before hand, because it was impossible to think like that after getting the result.
I didn't mind though doing not much with my husband, we spent the day together though and he is a very understanding and supportive guy, so we talked about next steps for our life. Since we have been together for a while and were starting to plan out our lives together.. it was always tough because we had to plan two scenarios: 1 where I was positive and 1 where i was negative. It was a relief to know my status either way because now I did not have to get bogged down in two different life plans, I knew that I am positive and now I am going forward with it. I am determined to make the best of it.
For me, the reason for getting tested was for us as a couple - to simplify our life and have 1 plan, but also to start to figure out how we were going to plan to have children also. We had met often with a counsellor too to help us come to this decision and it wasn't easy.
Hope that helps!