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Testing negative

United Kingdom
Life is to be lived
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Young adults Forum support

Have any of you gone through testing and got a negative result. How are you feeling since that result and have there been any unexpected difficulties that you’ve perhaps found hard to cope with when testing negative?

Matt

United States
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Young adults

I tested negative November 10th 2011. At first I was overcome with relief and joy but was surprised by some of the other things I felt as well. In an effort to be as prepared as possible for testing positive I lived the last 10 years assuming and living like I would have HD. I'd so convinced myself of that, that when I went into testing it was more to confirm my positive status to participate in research than it was hoping I was negative. So when I found out I was actually gene-negative it was hard to wrap my head around that new reality. I had a feeling of "well, what now?" i had put so much time and energy thinking and worrying It, it was strange to have that weight lifted. It was difficult to share my result with friends and family that are gene positive, I felt like I was gloating or rubbing it in. I had guilt about why I should be lucky enough to test negative when other people, far more deserving then me in my opinion, tested positive. I feel like there's more pressure on me now to do something with my life to be deserving of this time I've been given. I also felt like I no longer had a right to be involved in the HD community. But as a friend made me realize, just cause my risk is gone it doesn't mean HD hasn't greatly affected me and still affects those I love.

United Kingdom
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Young adults Forum support

Hi Amber,

You're friend is completely correct, HD impacts on many people, even those who don't have the condition. It is a very important point to remember and you are always deserving of support whether you test negative or positive.

Guilt is also very common when testing negative and a lot of people struggle with it. Has that feeling of guilt got any less/easier recently?

Matt

Australia
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Young adults Forum support

Hi Amber,
Just wanted to say a quick hi and welcome you to the forum. My name is Michelle and I tested negative a few years ago so I can relate a lot to what you are saying. I did a story for a magazine in Australia about my experience, and my family, if you would like to read it. You may even be able to show family and friends so that they can continue to support you through some of the complexities around this testing experience. I try and do as much as I can for the HD community and talk openly about my experience...i know its not easy, so good on you for being brave and sharing. Here is a link to the story if your interested...just scroll down the thread.
http://www.hdaustralia.org/viewtopic.php?f=4&t=303&st=0&sk=t&sd=a&start=15

United Kingdom
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Young adults

I really think everyone that has tested positive feels the same as Amber. However I do understand why people with a positive result are angry and hurt, they just get the 'why me' feeling and it is a horrible feeling in the gut I can imagine.
I tested just over 2 years ago when I was 17 (:O Out of curiosity, am I a rare person to test under the age of 18? - I'm intrigued to find other people who tested under the age of 18...) - Anyway, I felt exactly the same as Amber, spent the majority of my teenage life convincing myself I had HD, and to be honest I spent the whole 6 month testing process planning how I'd spend the rest of my life when I received my positive result... So was a huuuuuuuuuuge shock when I went into the doctors consultation room and received a negative result. The biggest feeling I had was guilt... My Dad was obviously relieved, but I couldn't help feeling guilty and unhappy for months and months.

Like you all touch on though - HD still plays a huge part in any persons life, regardless of the result. Personally I have an untested older brother, and my mother is in the final stages of HD.

Nice to see you all on the forum, by the way! Happy HDYO'ing. :) x

United Kingdom
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Young adults Forum support

Hi Laura,

Thank you for sharing your story. To answer your question, yes, you are extremely rare to get tested under 18! There are very few people in the world who have done so.

Interestingly there has been a push in recent years by some in the HD community for the 18 age limit to be scrapped. What do you think to that as a young person who tested at 17? Did you feel the system supported you well enough?

Matt

Poland
Happiness is easy.
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Young adults

Me and my Sister are both tested negative. Before testing we both were sure we would have a mutation (we just 'felt' it, which was stupid because I was almost 20, she was almost 19). She was tested negative a month earlier than me (but me, I didn't tell anyone from among my family about my testing process so how could they support me?). Firstly I sighed with relief (my sweet younger Sister doesn't have a mutation, whoa!), then I was a little bit jealous (and I used to ask her all the time: 'So, how is it now? Don't you feel your involuntary movements? Don't you feel strange? Are you sure you're negative?') but in the same time I felt it was the best situation for us ('I won't have to talk about testing, I won't make my Mum sad because of my positive (I was sure!) result and when I need I'll have the best caregiver ever - my healthy Sister. It's enough that she doesn't have a mutation'). Then I got my test's result, I was so surprised :) Everybody was!

Poland
Happiness is easy.
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Young adults

My Sister has decided for testing immediately - when our Dad was diagnosed. I needed a month more. Perhaps I wouldn't decide for being tested if I wasn't a student of University of Medical Sciences - I thought I wouldn't like to be bad (harmful?) for my patients. In Poland you don't have any meetings with psychologists or coaches before or during testing, so you are able to be tested after talking to the genetic counsellor only.

United Kingdom
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Young adults

Hi Laura,
I'm also a person who got tested at the age of 17. I never knew how rare of a thing it was before!
I received my negative test result in March of last year. When I got the result I was very happy but not as happy as I envisioned I would be. I'm the only grandchild (father's side) who has been tested. This side of the family has the habit of ignoring what is in front of them although my relatives have no qualms about telling me how brave I am to have been tested, which I find infuriating because I don't feel brave.
One of the hardest things that I have had to cope with since I received the negative result is my friends. They were never really that supportive leading up to the testing apart from the odd text telling me that they were always there for me. I think this was just because they had it in their heads that I wouldn't have inherited the gene from my Dad, until the day of the result where it sunk in that I COULD have a positive result. I was lucky, and their opinions went back to normal. I lost count with the amount if times I got given the words "I told you so" which I'm sure anyone will agree is maddening! Anyway, up to this day my friends still don't understand why I am having difficult with my negative result. They think I should be happy (which I am) and should forget the whole horrid business. They have actually said to my face that I should "forget about my family and not care who test positive because I am out of danger". I was mainly wondering what other people's experiences were in regards to their friends.

Thanks :) xx

United Kingdom
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Young adults Forum support

Hi Alaska (nice name)!

Welcome to the HDYO forum and thank you for posting your experiences of testing negative. I really liked what you say about friends not quite understanding the seriousness of the situation. I've heard a number of young people express that they have experienced similar to yourself in the lead up to testing and then post-results. When I think about this issue I feel it really is down to a lack of understanding and because of this lack of knowledge people try to be supportive without really thinking before they say things such as 'Oh, you will be fine', 'You won't get it', and then the 'I told you' that you highlighted when you do test negative. Testing is a major event in someone's life, some people fail to grasp the importance and try to play the situation down the situation as if there is nothing to be worried about. I think it all comes down to how educated they are on HD and being at risk. The more educated friends are the more understanding they can be.

You also make another good point that testing negative is not the end of HD for most people. Many still have to deal with it on a regular basis and sometimes there can be feelings of guilt for testing negative when others are at risk, positive or have HD. There's a lot of things to cope with. I am wondering how are you feeling over a year since your results?

Take care,
Matt

Australia
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Teens

I'm not sure if this has any relevancy, but I was born in 1995 when prenatal testing was available. So I was born knowing that I would never develop any symptoms.

At one point in my life, I felt guilty about being negative, because my older sister with whom we only share the same father, had tested positive. We look very similar, and I feel as if sometimes she looks at me and thinks that I am what she could've been, had she not inherited the defective gene.

For a while, I felt as if I didn't have a right to feel upset that members of my family had HD, because I wasn't affected myself. If I'm honest with myself, I still feel as if I'm not 'allowed' to.

I think it's some form of survivors guilt or something. If I ever feel myself getting emotional over the declining health of my father, who has been admitted into 24/7 hour care, there's this little voice in my head that tells me I'm not allowed to cry, and I end up forcing myself to stop.

I guess I just wanted to write this to tell anyone reading that it is okay to feel upset over the situation, even if you have a negative result. I'm still only young, halfway through my final year of high school, but I just wanted to share my personal experience and opinions.

Australia
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Young adults

Hi Amber.
This is a few years since your original post but I just tested negative a couple of weeks ago and have been struggling with the exact feelings that you have described. I'm finding it a little tricky to cope as everyone in my support network who are affected by HD are just so pleased for me, and my friends who aren't so close to HD just think it's the end of a relatively short journey (ie: the two years between deciding to be tested and the results). It almost feels disloyal to be sad or upset or confused.
I spent the weekend before my results listening to Matt talk about HDYO and it feels a bit anti-climatic to be negative.
Would love to be able to talk to someone in the same boat.
xxx Jenny