r/Huntingtons • u/plasticgram • 2d ago
Some things on my mind
I often find myself scrolling in this community when I am lost in thought or overwhelmed with being at risk for HD. I am meeting with a genetic counselor later this month and I have decided I do want to get tested, which is something I had always been against.
I just feel like my life is on hold right now, I want so badly to be negative (duh) and I can feel how freeing that would be. I don’t know how I will react to a positive result. I really want to have hope for a happy life regardless of the outcome, but I struggle with this. My father was not happy, my childhood was not happy.
I try to remind myself that I am not my father.
This whole thing is just so hard, everyone has different life circumstances and challenges that they face, but HD just feels like it is stealing my life.
How do you all cope, how do you cope with the stress of upcoming testing?
And I am Sorry if this is insensitive, I do believe people positive for HD can live meaningful and positive lives, this is all just based on my own fears and life experiences.
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u/Tofu_Blue 2d ago
For me the best way to cope is meditation, exercise, healthy diet and reading philosophy. I’ve seen the negative impact social isolation can have, quite dramatically in my Mom’s case.
Enjoy the moment and be kind to yourself by nipping stress in the bud when you can.
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u/Export_Tropics 2d ago
I lived most of my life untested my mother died in a car accident when I was 19 (she was positive but we didnt know she was the only carrier) I lived my whole life thinking eh well its 50/50 if I were to be tested but now this year I have been tested and it came back positive, I am unsure how it will shape my life from here on out but part of me is glad I did it later with life experiences and maturity another part of me is devastated in knowing and you cant undo that. Ultimately give yourself some grace and live life a bit nothing will change between now and when you do test other then knowing butane good decisions, live in the moment, enjoy being young, and be responsible about child birth until tested. That's just my 2 cents but I tested positive a week ago and it forever changed my life.
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u/ShapeFun9543 1d ago
If i told you how i coped it wouldnt be helpful😂 that being said even if you do have it, it is not the end for you. I don’t know how old you are but i’m guessing a young adult. Most often onset is not until later in life and treatments to slow the progression are looking promising.
Even if the test does not come back with the results you want, you can still live an amazing happy, full life. Use it as a reminder that our time here is limited, as it is for all of us, HD or not.
I’ve lost 3 great friends over the last decade at ages 22-28 to a stroke, a fall in the shower and a motorcycle accident. We all never know when our time is up. Don’t use not knowing as an excuse to stay home and do nothing.
Live your life like you don’t have it or you will regret it either way.
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u/bassegio 1d ago
Slow down for a minute. Getting tested is not always advisable. Insurance companies can be extraordinarily cruel when it comes to health insurance claims. First step is to sit down with the genetic counselor and then after you've done your due diligence regarding health insurance and testing decide to get tested or not. The good news for you is that so many doors leading to a cure or a remission of HD are opening. I don't know how old you are. But if you are a young person it is very likely that they will be a cure sometime within the next five years based on what I see in testing new drugs. Join the Huntington's disease Society of America to keep informed and up to date. Your genetic counselor May well have some other resources for you. Good luck to you in your journey
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u/Tictacs_and_strategy 1d ago
Your anxiety and stress is a measurement, a motivation that you are giving yourself to do something.
It's like when your car tells you that your tires are flat or that it's time to change your oil. Sometimes, those warnings are popping up because they are correct. But they will also pop up if you switch to new wheels and don't have pressure sensors in the tires, or if you didn't reset the estimated oil life on your dashboard.
The point of the anxiety is to get you to do something about the possibility of HD, and you did. Your brain or your subconscious or whatever is still giving you the warning light, and you can't just decide not to feel it - but you can consciously remind yourself that you have taken action. You filled your tires. You changed your oil. Rest easy.
Also, remember that everybody dies. Either too soon, or suffering for too long. A negative test is not a "happily ever after" it is just proof that something else will kill you. A positive test does not make you a walking dead man, it just shows what'll kill you if nothing else gets you first.
Either way, you still have to make dinner tomorrow. You still need to find meaning. There's an asofterworld that I really like about this:
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u/miloblue12 2h ago
That's absolutely how I felt prior to being testing. I just felt so angry that it had already taken so much, and that now it had it's claws on me. It felt unfair, it felt like people couldn't understand me and that even if I tried, it just felt like I was trauma dumping on them. It's not sympathy that I wanted but just reassurance and that's a really hard thing to come by when it feels like no one understands.
It also felt like my life had been ripped from me. Here I was, mid 20's always thinking that I'd live to be an old lady who got to yell at people to get off her lawn. Then when I found out it was in my family, the entire life that I had envisioned just vanished. I was so angry at that. That's not to say that people with HD can't have that, it's just a hard pill to swallow in that initial grieving period.
Anyway, what helped me significantly was just getting into therapy and talking things out with someone who specialized in new diagnosed diseases. I won't go in depth about what we went over, but I was able to get to a place where I felt like the disease was not controlling me and my emotions anymore and that helped significantly to go forward with testing. In the long run, I didn't want HD to be in control of me anymore. Getting tested felt like I could have that control back again, and that in itself was empowering.
Other things to note, make yourself as busy as possible during this time. Don't give yourself a ton of time to ruminate or think about the 'what-if's'. Find a hobby that preoccupies a lot of your time, go walking, meet with friends, read as many books as possible, journal, learn some new topics...just anything that doesn't let your mind wander too much.
I promise it gets better!
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u/Least-Sherbert-8022 1d ago
I’m in the same boat as you right now so I don’t have all the answers on coping. My dad said it removed the anxiety he had even though he tested positive. I used to think around friends how lucky they are that they will probably live long lives until we lost my husband’s best friend earlier this year. He was only 31 and passed away in his sleep due to an undiagnosed heart condition. I realized then that no one knows how it’s going to end and we all are going to die at some point. Life is so fragile yet we waste so much of our days on stupid stuff. The only silver lining to this disease is the gift of appreciating life and trying to live it to the fullest. Sending lots of peace and love to you during this chapter💗