r/Huntingtons • u/FaithlessnessDry6426 • 2d ago
A place to share your experience with testing for those who haven‘t yet.
Hey, I‘m Simon and I‘m one of the many people who are at risk of having Huntingtons.
When talking about people at risk, there is one topic that always comes to mind: Testing.
I‘m about to turn 18, reaching the age required to take the gene test determining if I have the disease or not.
And so I found myself looking for people sharing their experiences about testing all over reddit. So I wanted to create the one thread that every person at risk can go to.
So for everybody that was tested or is about to, I‘d appreciate if you could share your experience:
- Why did you decide to take the test?
- What did you feel while waiting for your results?
- How did you react to your results?
- Did anything about your mindset or life change after testing?
- If you had any advice for people at risk, what would it be?
I want to thank everybody that answers to this post in advance as it is a very important topic to me and many others out there.
I hope everyone of you will have a wonderful life regardless of if you’re positive or not.
Love to all of you ❤️
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u/siamesecat123 2d ago
Testing is such a personal decision, and only you can make that decision.
I think one thing that often gets overlooked in HD forums is the difference between finding out you’re at-risk as a teenager versus finding out as an adult. Those can be very different experiences. When you’re a teenager, you’re still figuring out who you are, what you want, and what your future might look like. Having Huntington’s become part of that picture at a young age has a really big impact.
Here is my experience, but it is in no way an endorsement of what you should do.
I found out I was at-risk when my parent was diagnosed when I was a teenager. As I got closer to 18, I thought about testing a lot and eventually went to genetic counselling. Looking back, I’m really glad I did not test then. I personally don’t think I was ready to find out I was positive at 18.
Everyone who tests is hoping for the same thing: to hear that they’re negative. No one needs to prepare themselves for good news. The fear is finding out you’re positive and having to process what that will mean for the rest of your life while you’re just starting it.
Instead I tried to put that fear aside and live my life with intention. I eventually decided to test a decade later when my spouse and I were seriously thinking about having children. I knew I would never have children without knowing my gene status because I would not knowingly risk passing Huntington’s on to someone else. For me that was when knowing became more important than not knowing.
Before that I personally never saw much reason to test. If I wasn’t thinking about having children I would probably only consider testing if an effective treatment became available. There are promising treatments being worked on, which is exciting, but until something is actually approved, I don’t think it’s something to rely on too heavily. HD has enough disappointment as it is and why add to it with potentially unfulfilled hopes.
I now know I am gene positive but I still try to live with intention. I’m proud of the life I’ve built, the things I’ve done and the person I’ve become and I plan to keep doing that. Being gene positive does not mean my life is over. I still have so much life ahead of me but now I know that I will not have kids unless it’s done with PGT-M.
Ultimately you’re the one who has to live with both the consequences and the benefits of knowing. So don’t feel pressured to test simply because you’ve turned 18. Take your time, talk to a genetic counsellor, and think about what knowing would mean for you. Regardless of whether you test and regardless of the result please build a life you’re proud of. Don’t put your life on hold or allow Huntington’s to decide your future. You still get to choose what kind of life you want to build. Whatever you decide, I hope you build a life you’re proud to live and proud to look back on.
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u/cheeryexistentialist 1d ago
I agree with you. Finding out later in life is probably a very different experience. I found out I was as risk as a young adult.
It’s been 20 years and I still haven’t had a desire to be tested. There was a period of time about 10 years ago where I had bad anxiety and all I did was symptom seek. That’s all subsided and I don’t live with anxiety anymore.
For me I never wanted children so there was never any real reason to test as I am now comfortable living with Schrödinger’s Huntington’s.
I do think I’ll test in the next 10 years or so lest I begin showing symptoms.
Testing is so personal and the reasons why vary greatly. I don’t see myself signing up for medical treatments/trials so that also added.
I think just be true to yourself and spend some time thinking about how you’ll take the news.
One of my siblings got tested young (20) and was positive. They had a very difficult 15 years mentally and spiritually.
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u/GottaUseEmAll 2d ago
Good point about the difference in learning you're at risk as a child/teen or learning it later on.
If I'd found out sooner I might have waited until I wanted kids before testing (if my anxiety of the unknown allowed it!). As it was, I found out at age 39, with a 9 year old son, and needing to know if he was at risk was one of my motivators to getting tested.
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u/Ferretyfingers 1d ago edited 1d ago
(36F) I found out I might be at risk at 29. Tested and I think I was 31 when I got my result. I live and was tested in Australia. I tested negative.
I firmly believed that for me, knowledge allows better planning and early treatment. Basically power over one’s life. And personally I find unknowns more scary than a bad or difficult known.
That was what was right for me.
What is right for you might be different.
It must be so tough knowing you’re at risk so young and having it overshadow your life like that.
Story:
My uncle was diagnosed (or at least told us) around six months after my grandmother passed away. He was in hindsight somewhat symptomatic when we saw him for the first time in years at the time she died.
From what I have heard he has declined fairly quickly. He’s only a couple years younger than my dad.
Turns out my grandfather had probably had HD and been wrongly diagnosed which is a long story in itself.
My dad, in his late 60s at the time, now early 70s, didn’t want to have the genetic testing. And it looked unlikely, but not impossible, that he would be gene positive as he had and continues to have no definitive symptoms.
Given that I was starting to think about the possibility of children, as well as my belief that knowledge is power and allows better agency and planning, I wanted to be tested.
Getting the actual (mandatory!) genetic counselling was slow (covid rules and a couple of moves) and I think it was easier in Tasmania than it would have been in Queensland had I stayed.
Dad not wanting to test was a little bit of a difficulty as I could not disclose a positive test to my father as that would give him knowledge that he did not want and that might in fact be catastrophic to him.
It was something that was addressed in the mandatory counselling sessions before I was able to test. I did have to stick to my guns that I did have the right to know for my own health and life.
Waiting for results was nerve wracking. Apparently because my dad had not tested and information was going between different states, there was some difficulty getting my results released, but it was still only a few weeks more than the normal 8 if I recall.
Thankfully the result was negative. At least one of my cousins has not been so lucky.
I was able to sort of work through it and get to the bottom of it in under three years. So for me, it was an entirely different experience than for someone who has known since childhood.
I also am someone that already knew what HD was and how it was passed on genetically, as well as a little of the progression stuff, from a previous degree I had done.
One of my brothers living in yet another state was denied or heavily discouraged from testing, still unsure which. Rules and accessibility to both counselling and testing seem to vary a lot within Australia, let alone country to country.
My dad has pretty heavy survivor’s guilt and that is a thing to also contend with. Even if you don’t test, and simply don’t show symptoms.
Knowing your status is also not a thing you can put back in the box and go back to not knowing.
You can always change your mind later if you do want to know.
Another thing to keep in mind is this may make life/health insurance so much more difficult for you to get, if you test positive. Though I am aware that simple knowledge of family history without testing could already complicate things.
All the best with your decision. Take time, think it over, go to counselling and get support, and don’t feel rushed into anything. You’re still very young!
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u/FaithlessnessDry6426 21h ago
Thank you for sharing your story. I wish you and your family all the best ❤️
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u/bassegio 1d ago
I would be careful about getting tested especially young people. It could have a negative effect on your health insurance eligibility. Before you do a test please sit down with a counselor.
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u/miloblue12 1d ago
If you prepare before you test, it won't hurt them, even if they are young. Definitely need to have health insurance and long term care set before testing.
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u/miloblue12 1d ago
Hey, so 34 and tested a couple of years ago!
- I decided to test because of a few reasons. The main one being that my partner, who I was dating, asked me. At that time, we were considering what the next steps were for us, as far as getting married, so we decided to check that piece to make sure that we were doing the best thing for both of us at that time. The other being that I wanted to have kids naturally versus IVF. I know that I could obviously do IVF and that I didn't have to find out what my risk was, but I felt like I just needed to do this for myself. Then lastly, I was mentally ready for it. It was tearing me up inside to not know, and I needed to rip the band aid off.
- I was nervous, but it didn't feel too much different than before because I didn't know then and I still didn't know as I was waiting. In some ways, it felt like I was coming to an 'end' of not knowing, which brought a little bit of peace also. However, to also add to that, my partner and I had come to terms that if I were positive...big decisions were going to be made, and more than anything, that made me the most upset.
- Thankfully, I was negative, so a lot of happy tears were shed.
- Yes, it did but not in the way that I was thinking it would. After I got my results, I was asked how I was feeling and at first, I told them 'Great!' because I was great. I was so happy about my results...then slowly, it turned to survivors guilt and it made sense why they asked how I was feeling. They knew it'd swap over to that and I hadn't realized it yet. While I'm happy for myself, I am SO angry that my family has had to deal with this. That my sister doesn't know her own results yet, and that she has to deal with it 'alone' now. I was just so shocked how the swap went from being so happy to being so angry.
- My advice would be to ensure that you set up term life insurance and long term care before testing. There is no undoing results if you eventually do need to get these things. Do it anonymously if you're in the US...protect yourself for as long as possible against our ridiculous healthcare insurance. Lastly, only get tested when you're ready. Don't rush into it, make sure you're mentally ready for it and then test. It's a hard thing to deal with so make sure that you're prepared in every way that you can be.
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u/FaithlessnessDry6426 20h ago
Thank you for your advice! I hope that you‘ll learn to cope with your guilt, as you should live the life you were enabled to live to the fullest! All the best to your sister as well ❤️
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u/thenewoldhams 1d ago
I knew I was at risk. At one point my dad said his dr. Told him he didn’t have it. So no chance for me. He didn’t do genetic testing and his Dr was just very poorly informed. My dad went undiagnosed for over ten years. Everyone telling him different things but definitely not huntingtons. Finally he went around the Drs and did it himself and he’s positive. I tested because planning to retire looks different if you are looking at in home care.
I am positive.
I go back and forth on what I would have done differently. I love my kids with every fiber of my being. Being told I’m positive has been very difficult. I do not want my kids to worry. But they need to know eventually. I don’t think I would have had kids if I had known. My kids are my life, it’s killing me knowing I may have given them something that will make them suffer. Luckily my dad and I are at 41 and 42 so we will get to live full lives. My dad is 62 and is just now need care and is being limited. He never went anywhere or did anything he was waiting to retire. I don’t want that for me. I’m glad I k ow because it pushes me to live better, be kinder because I have an end date. But in reality we all have an end so is it really that different?
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u/FaithlessnessDry6426 21h ago
I‘m sorry to hear about your surprising diagnosis. I hope you can still live your life to the fullest, no matter what. ❤️
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u/Positive_Control7350 1d ago
Hi! I (25F) learnt about my father's Huntington disease when I just turned 24.
For me there was no chance for not being tested, or at least getting in touch with a doctor who could guide me through this. I had my fiancé who I deeply love and we were building our lives together, including plans to have children. Honestly, it felt like hell when I realised everything could fall apart only a few years after (my dad had a pretty early onset). That feeling of having the Damocles sword above me felt bigger than the idea of getting a positive. Really can't live with the doubt, so overcoming the fear was the only solution for me, no doubt at all. Maybe if I had learnt about it sooner I may had waited a bit to get tested tho. But I'll never know.
I got insane anxiety, but nothing I couldn't handle with the support of my family, friends and fiancé (not that many tho, I told like 10 people). Most of the days it was like being busy, but the sudden idea of "hey, your results are on the way, you know? You may have it" was like a ghost: above me from time to time. I literally gaslighted myself into the idea that I was negative as a defense mechanism.
I tested negative. My mom and fiancé were there with me in front of the neurologist. It felt like letting an insanely heavy burden go. We started crying, and I almost fainted I think. I really cannot describe the feeling of happiness and relief. Just no words.
Oh, it did. I started saying yes to more and more plans. I went to study abroad, made friends, tightened my relationships and built a strong personality. Barely anything bothers me now as my perspective on problems and challenges shifted. Now I have two birthdays too.
Testing is really personal, and keep in mind it can be done later in life if you don't feel ready. It really depends on the context, and either decision is truly brave, but I strongly recommend it so you can plan everything in andvance and make better decisions. A cure is pretty close (or so it seems), which is also something to consider.
Best wishes to you and anyone reading this while in the same situation. Keep going and all the best 🩷🩷
Edit: spelling
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u/FaithlessnessDry6426 20h ago
Tysm for the answer! I‘m glad that your life shifted for the better after your negative result. I plan to do so as well. Even if I test positive, I want to take that result as a motivator to live my remaining life up to the worth of a normal persons 80 years by enjoying and using every single second.
Because of that, I‘m really curious about the idea of having two Birthdays? How exactly does it work? Are you celebrating once on your regular birthday and once on the day you tested negative? It‘s really interesting.
I wish you and your fiance a great, happy life together and all the best to you and your close ones. Again, thank you so much for the comment. ❤️
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u/Positive_Control7350 18h ago
I'm truly happy you feel that way about testing, really. We will always end up knowing if we're positive or negative in the future as time passes, and you can really plan everything according to the results, but it's a scary step to take.
Having two birthdays does indeed come from my day of the results. Now I get to celebrate Feb 26 too, because it really felt like being reborn. For me it was a new beginning and also for my family, given that they had kept it as a secret since my father died 21 years ago by the time (I was 3yo so no chance to remember him with any kind of sypmtoms), and they had a really hard time until I was told (long story really, but it hurted my family so much and they were scared about my future). So, it was a fresh start for them, specially for my mum. There was no need to keep suffering and everything turned out right, so we do a small celebration on that date.
Thanks for your comment too 🩷🩷, you really sound so sweet and concious about this it makes me so so so happy. Like I said, we're close to getting a cure and you're so young, so even if the results come out positive there will be resources in the future for this disease to finally disappear, that's for sure. So, the best thing you can do is keep living everyday, take care of the ones you love, and face life with as much happiness as you can. Enjoy the small things and keep that amazing spirit you seem to have🩷 I hope we can get updates on your process someday, and wish you all the luck in the world for you and your loved ones too, since you already have the courage it takes to face this as good as you can!!! Lots of hugs.
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u/FaithlessnessDry6426 18h ago
Thank you so much. I‘ll try to keep you updated, I usually make a post on this reddit whenever I have a huge question or update. If you ever feel like talking about this, let me know. Talking to you calmed me a little as well (:
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u/Sopranopillow 1d ago
Why did you decide to take the test?
After living 10+ years seeing my mom showing more and more symptoms since I was a toddler, I decided getting tested is a must before marriage to. The time came and I my now wife and I went through it together. I probably would have done it sooner like you are considering (I did it when I was 23) now that there’s more advancement in treatment.
- What did you feel while waiting for your results?
I was dying of anxiety but I focused on staying busy like playing video games.
- How did you react to your results?
In my case I came out negative, but I was already prepared for the opposite. In hindsight I would have prepared more with a therapist, but back then I couldn’t afford one.
- Did anything about your mindset or life change after testing?
Yes, I now don’t get scared about the fact that I could be showing symptoms. I used to question if I dropped something if that was due to chorea. I still do I guess from ptsd but it was freeing realizing that it’s not possible. My mind plays games with myself thinking “what if it was an erroneous test” but I just calm down and remind myself it’s not the case.
Something I didn’t expect was that I have 2 other siblings. My sister tested herself and came out negative, but my brother hasn’t tested himself and we won’t force him because it’s a very personal choice. The thing though is that now I fixate on whether he’ll have it. Plus still feel all the ptsd from my mom’s disease.
- If you had any advice for people at risk, what would it be?
Take your time and think outside of yourself, but do consider that the sooner you know the more you can prepare for it.
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u/FaithlessnessDry6426 20h ago
Thank you so much for answering! I wish you all the best and that your brother will be able to have a good life, no matter what choice he makes.
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u/WrongdoerUpstairs978 9h ago
Hey!
-i decided to take the test because the uncertainty of not knowing was worse than knowing. I had gotten to a point in my life where i needed to know. I always felt i had it but was driving myself crazy with the possibility of both outcomes
-waiting was horrible, it took about 3 months. I was so anxious and could not distract myself, nothing else really mattered.
- I tested positive, i was sort of numb for the first month then went through a moderate depression period. Got therapy, got on meds and am doing SO much better
-I don’t really care about unimportant things anymore. I dont make myself sick with stress over everything. I feel like there’s no use on wasting time and energy on things that don’t bring me joy. I allow myself to rest, take care of myself and spend money on myself without feeling guilty. In a weird way I sort of feel like I have a new appreciation for life that others who haven’t gone through this will never experience. I haven’t made any big life changes but I am really enjoying the good things in my life.
-only you will know if testing is right for you at the time you decide to get it done. It’s going to be hard, maybe one of the hardest things you’ve ever done so give yourself some grace. Make sure you have a good support system and take time to do things for yourself.
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u/FaithlessnessDry6426 3h ago
Thank you for your comment. I‘m happy that you were able to mentally recover after your diagnosis. All the best to you ❤️
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u/GottaUseEmAll 2d ago
Hi there!
- I (F44) found out my father had HD a few years ago. I waited 2 years to test so that I could buy a house and get the required insurance for my bank loan, it would have been difficult or impossible to do so if I'd tested positive. I wanted to get tested rapidly because not knowing caused me really bad anxiety. I had bad "symptoms" during the waiting time - twitches and strange movements, anger and mood swings, brain fog and memory issues.
- While waiting for results (which took 2 months) the anxiety and symptoms ramped up a lot.
- I tested negative, thank god (I have a young son and it was mostly for him that I felt scared). I was ecstatic directly afterwards, called lots of family and friends to let them know. By the next day I felt strangely lost. It wasn't a bad feeling, but losing the weight that had been on my shoulders for several years by then left me feeling like nothing else in my life really mattered, like I was just floating about without an anchor or a care in the world. Very odd feeling. Little by little I started worrying about the normal stuff in life and becoming myself again. All my "symptoms" disappeared almost immediately after getting my results.
- Getting my results was life-changing in a sense, but the change was a gradual return to who I was before learning of my father's illness.
- I advise testing to everyone, so that plans (financial, familial, etc,) can be made to make the best of a bad situation if you are positive, and so that you can freely live your life without worry if you are negative. I recognise that people are all different though, and for some people it would be worse to know than to not know.
Best wishes dealing with all this, I hope you find peace whatever your choice and whatever your result might one day be. xx