The only reason I am really talking about this is because it has been on my mind a lot recently, which is weird because I have actually spent some time not thinking about it, but it really hit me that my 18th is soon and that's kind of important. I know most people get excited about their 18th because they can go out and buy alcohol, or buy a chainsaw, or scissors, or have a vote. Well for me I don't care about any of those things (well maybe buying scissors) But when I am 18 I will be able to finally to get tested for Huntington's disease which I have been wanting to do for like 3 years now.
However there are so many things that can come with being tested, well mainly if the result is positive. If negative then I never have to worry about it again, but if I get a positive result then so many things stem off of that. What am I going to do when it comes to the possibility of passing onto kids? Should I have kids of my own? Should I go IVF? Should I test them when pregnant and abort the positive results? Should I just have a kid and let them decided if they want to be tested? Then from that what age do I tell them? I can't exactly spring this all on them too early, but I don't really want to hide a massive part of their life for so many years.
There is also the whole starting of symptoms, and changing. Yeah the plus side to all that is that it probably isn't going to start until I am in my 50s, but I don't want to be remembered for my (I guess) "deteriorated" self. Because that isn't me.
Hurting others is one of my biggest things. There is part of me that isn't sure about getting tested because I have no idea how my family will react to it. I feel if I do have this then my mum will feel guilty for passing it on, I don't think my sister and Dad will take the news too well, but they wont even talk about it to me. That's the worst bit. I don't want to have a massive falling out with my family over this, because I saw what happened when my uncle did not like my mum getting tested.
Currently, I have my heart set on being tested. Because I hate the not knowing, and I feel that could cause more problems than knowing. I mean if I didn't know anything about any of this then that would be different because then every decision is a whole lot simpler, but I do, so I need to know whether or not I have HD. Because like I said, if it's negative, then I never have to worry about it developing in me or my children. Yeah my granddad, and mum will still have it, but I can look after them, and hopefully it will end in our family with them. Then if I know it is positive I can start thinking clearly about my future without the big WHAT IF?
I briefly spoke to my mum about it today and she said I need to go talk to my doctor (who we aren't sure who that even is anymore) then get referred back to the genetics Councillor and things, to begin testing once I turn 18.
And after scrolling up and seeing how much I have drolled on about this thing (which you don't even need to know) I feel I should end this post here. I guess writing my feelings down has actually helped me a lot, so yeah, if you read through it all, well done, and thanks I guess.
See you in the 'morrow!
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