I know this is an older forum, but I just recently joined. My dad was diagnosed two weeks ago with HD, it was horrible, I began reading people's stories online and seeing what really happens. It was horrible to read, and it really made me realise what is going to happen for the remainder of his life, after all that I eventually went to the doctors and got diagnosed with mild depression due to it. I'm not currently on meds for it, but I do find it relieving to speak to others, even if it is online. I do feel has it taken a toll on me, as I am a stand up comedian. I have suddenly lost the motivation to continue doing activities, such as comedy, and the gym.
I am also aware of my 50/50 chances. Although I really try not to think about that, it creeps up on me here and there. I've got to the point I'm physiologically making myself think I'm seeing symptoms.
I know I've said a lot, but I'd rather get this off my chest.
All the best.
Thank you for sharing your story. Sounds like you are having a whirlwind of a month and at times it can be overwhelming. Is this your first time reaching out? Did you know that there was a possibility that you would be at risk?
My father waited to tell my siblings and I about his diagnosis until I was in my first year of university. I can remember all the emotions of being at risk. Personally, I grieved for my father and for my future. It can take some time to process the information, but you can do it.
Keep your chin up!
Yeah, I was always told I would need to get tested. I just never knew the full extent of the disease. This is my first time reaching out to others who may be or have past my situation. I feel it is useful to speak to others about it. How did you deal with the emotions it brought you?
Hey DarylDixon (#walkingdead?),
When I decided to get tested I was 19 (25 now). At the time I was unaware of anyone my age who was even at risk aside from my siblings and cousins. I do not believe the genetic counselling provided was sufficient support for my needs as a young person because they were used to testing symptomatic people.
I attempted to go to my local chapter, but being around so many people with so many different symptoms made me face my future and terrified me.
After testing, I guess the biggest thing I struggled with was self worth. I felt that I had a big tattoo on my face for everyone to see that something was wrong with me. Looking back I can see that I dug into my education as a distraction as I fought with myself that nothing really had changed, but it had. As for my family, I felt a lot of pity and they were reaching out to me - I absolutely hated the looks of sympathy and just wanted to be treated like normal. After less than a year I dumped my boyfriend of 3.5 years because I could no longer see a future with us.
It was the little things that began to 'reset' and try to focus on being happy. The first big one after testing was when I was shovelling the driveway and it started to snow. My heart was pounding and I took a second away from everything...I just stood there and took in the feeling that everything was going to be ok and to empower myself by not letting my test results take away from me.
I still at times struggle with aspects that I may not have considered, but it was all part of the choice of knowing. I still think that I made the right decision for myself because I feel that I would be stressing myself over every tired eye twitch or forgotten information, but I can't stress how individual this decision is and the timing for doing it!
Overall, it is a whirlwind of emotions and to have the right support is paramount.
Thank you for your reply, I'm finding it helpful chatting to someone who is more educated on the matter.
Yeah, my username was chosen from The Walking Dead, I'm a big fan.
The whirlwind of emotions is definetly tough to deal with, and I like how you made it clear you are able to feel happy even after the testing.
I'm still in a mental ping pong on wether or not I should be tested, right now I know it would not be a good idea since I'm not mentally prepared. I have also been watching videos on others experiences, which I have found interesting.
Many thanks for the support.