This is probably never going to get posted but I'm going to write it down anyway, to make me feel better or some psychological shit like that. Basically this post is about the troubles of my life, well the main trouble. The Genetic Disorder.
About 4 years ago, my granddad fell off a ladder and had to go to hospital. There they took some tests and eventually discovered he had Huntington's Disease. At first I didn't really understand it so didn't think much of it. Then I learnt more about how it was a genetic disorder and read a symptoms list my mum had and started believing I had it. Which is stupid. But I was naive and at that point in my life I felt like I needed to be punished for the way I had acted previously. But my mum being the voice of reason told me that there was a 25% chance of me having the disorder, cause it wasn't certain if she had it. So I pretty much dismissed the situation.
After a while though it all got brought up again, cause my mum and her brother had different views on the situation. It started with my mum wanting to get tested and thinking that Jeff should do the same, but he didn't agree. My mum had also told me and my sister everything she knew, but my uncle didn't even tell his kids that our granddad was ill. It was awful cause I wanted to talk to my cousin Hollie about it, I wanted to know her thoughts but I couldn't cause I wasn't allowed. When my mum's results came back positive, it became a little more serious and I wanted to know more. I wanted to talk to my sister about it, cause she's my sister I need her, but she wouldn't talk about it. My dad wouldn't mention it either. I mean we spoke about how it affected granddad but when it came to us nothing.
I always spoke to my mum at first, asking questions about it to learn more, and she offered to take me to see her doctor who specializes with families who have genetic disorders. She refers to him as Lovely Doctor Simon. As you might have guessed Hal (my sister) refused to go which upset me cause I wanted her there, but I respect that if she wanted to talk about it she would. So I spoke with Lovely Doctor Simon and it went ok. I understood everything a little better, cause he told me if I had it I wouldn't get symptoms until the age my mum started (she's 48 now and nothing yet) so I was feeling ok. However he then told me the news that kind of broke me. I couldn't get tested until I was 18. This was last year when I was 15 and I freaked out, cause I really wanted to know whether I had it or not. Then my mum told me that I should wait until I was an adult, so that it doesn't ruin my life. But the not knowing is the constant pain.
At this point I was pretty low, every morning I would be alone on the bus so would start thinking about all this going through my mind and trying to process it, and when I got to school I broke down in tears. It was pretty much everyday and I would have to go talk to my mentor, my head of year, and pretty much everyone. And talking about it only made it worse. Cause truth be told they thought my main worry was me having it. But it actually wasn't. I was worried for everyone around me, like my granddad, cause watching him sometimes it is heartbreaking, he can't talk properly sometimes, and he seems really sad cause he can't do a lot of the stuff he used to. Then I would worry about coming home and finding my mum had changed due to the disease, and I would have to try and cope with that alone cause Hal wouldn't talk to me. There is so much going on in my tiny little mind.
Not only this but around the same time we found out my nanny had cancer. As it was also on my mums side I felt like if I was upset about it I couldn't talk to my mum cause she had it worse than me, she didn't need me talking about my worries. Eventually the school got me to talk to this teacher every week who was really a Councillor but she was like one. It was good cause she listened and understood things from my point and others and I felt a lot better, after a while I just went and spoke to her to take some time away from things, drinking tea, and missing P.E. However, problems kept piling up like my other granddad getting cancer, and the continuation of the communication on my family breaking down. I kept going to see Lovely Doctor Simon with my mum every now and then, and spoke to my teacher friend, and things started to look up again.
There is another situation during last year that was awful. And it was a comment made from a very conservative friend. Sure everyone is allowed there opinion but there is a time and a place. So my friend Connor, knew about my family, and during a lesson of Biology we were learning about Evolution. This lead to a conversation about how Connor thinks that people have too many kids and eventually it will lead to the world starving. So I said that I wouldn't mind dying so others can survive and Connor said he would hypothetically kill the weaker part of the species like you. And I was like what do you mean, and he pointed to my Huntington's Disease Youth Organisation Bracelet. That was a serious no go. Cause me fine, but my mum and my granddad deserve to live more than some of the cunts who live out there. He realised this bugged me and tried to make it better by saying his family also suffered illness, but still. At first it wasn't a massive issues, but the more he tried to defend himself the more it blew up in his face. He started talking about ecological factors and more non-sense that I stopped listening to cause he drove me to the point of wanting to kill him. But we don't talk about it anymore and I tend to stay away from his conservative bullshit.
In that paragraph I mentioned Huntington's Disease Youth Organisation. This was probably one of the best things about everything. I would speak to interesting people who were in my situation and it made me feel a whole lot better. There I felt like no-one is alone going through stuff. From there things got better cause my uncle had finally told my cousin about granddad and I told her that if she wanted to talk she could talk to me or go on the website. I didn't want to pressure her cause it might upset her, that is also why I never mention it to Hal either. To this day neither of them have spoken to me, and that sucks. But I guess they deal with stuff in their own way, and I deal with it in mine.
For the past 5 months I have rarely thought about all of the things I used to worry about cause I had the distractions of my friends. It was amazing cause I look back and it felt like a lifetime ago, cause I am so happy. Well was so happy. It's swept over me again to be honest. The worrying and the eagerness to be 18 so I can finally be tested. I don't want to start mentioning it again to my friends cause I don't want to bring them down with me. However, I think they are going to notice mainly cause when I'm alone I think about it, and the other day on the late bus I did and I cried a little, but when people ask me I just sweep it under the carpet. I spend so much time talking about my problems, and I don't want people to worry about me. So I just put my happy face on and try to forget, and sometimes it works, and others it is just a mask. It may not be healthy but why upset everyone, when it is much easier just to cry on my own unnoticed.
This genuinely made me feel slightly better. Whether or not I post it is going to be a weird one. I don't want to feel attention seeking but I don't know, thinking that somebody out there is reading this and offering help is comforting. So maybe. Maybe. Obviously if you are reading this then it means I have posted it. The only reason that is, is cause I have actually spoken to someone and it made me feel slightly better so maybe sharing it on a wider scale should improve, but hey you never know until you try. And if you read it all thanks for staying through to the end, I know it was a lot of me droning on. I may post more about the continuation of my journey, hopefully it would get better. See you in the 'morrow, hope I haven't completely put a downer on you day, night, whatever.
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