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Testing, or at risk Discuss testing for Huntingtonís disease, and living with the risk of HD

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Old 01-04-18, 04:57 PM   #1
Rainbows1034
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Default Worried about being alone

Hi,
I am in my mid 20s and my father has Huntingtons. I have not been tested. I am worried about my future- will someone still love me even if I could be sick? I never thought about getting tested until now. I am worried one of my siblings is already showing symptoms.
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Old 03-04-18, 11:08 AM   #2
Gabby
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Default Re: Worried about being alone

Quote:
Originally Posted by Rainbows1034 View Post
Hi,
I am in my mid 20s and my father has Huntingtons. I have not been tested. I am worried about my future- will someone still love me even if I could be sick? I never thought about getting tested until now. I am worried one of my siblings is already showing symptoms.
Aww Rainbows , I married my husband knowing he had the HD Gene he didnt have symptoms at the time .. we can't help who we fall in love with . It dosnt make the relationship easy but we had lots of other issues which tested us too . Ex husbands and wives and step children so it was pushed to back of our minds . Its a shame and obviously worrying if you think your sibling is already showing signs it still means your chance is 50/50 regardless of their status . Testing is not for everyone you have to do whats right for you .

Gabby
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Old 03-04-18, 06:06 PM   #3
Cupcake
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Default Re: Worried about being alone

bless your heart darling, it was my hubby who had HD, we did not know when we married, and I adored him, it was challenging but I meant my vows.

I have two sons they are untested and face that dilemma you find yourself in. They donít want to test because they are afraid and not ready to deal with the outcome if not good. Only one is in a long term relationship at the moment, but they both have been very honest with girlfriends about the illness, and their girlfriends saw my hubby so poorly. The youngest has been with his partner for 5 yrs, they are facing the risk together and will look to have a baby going through PGD. When you meet the right person,they will love you for you, I am sure you could chat to someone your age in the youth section that is run by Matt, I am sure someone can add the link for you.

You are in turmoil at the moment, but you could always go for a chat with the genetics team, there is no rush to test or make the decision to test, but counselling may help you a great deal. The helpline of the HDA should be able to put you in contact with your local SHDA.

Take care xxxxxx
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Old 04-04-18, 11:03 AM   #4
shiraz
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Default Re: Worried about being alone

Hey Rainbow.....they say there is someone for everyone, it's just a case of being in the right place at the right time and catching cupid's arrow as it gets fired at you!! My husband was diagnosed with hd and I'm still here doing my bestest to look after him. I love him dearly and wouldn't swap him for the world - though I'd be tempted for George Clooney!! When you fall in love with someone you don't do that just so long as they don't get ill.....you love them warts and all. Love will come your way.....
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Old 04-04-18, 11:06 PM   #5
Rainbows1034
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Default Re: Worried about being alone

Thank you so, so much for your replies. I feel so alone, I have never known or spoken to anyone (besides my family members) who have been around HD. It is amazing to see responses from people all over the world.

I am going to try to find a youth group to join. I did already look for a meet up in my area, and came up with nothing, which was quite discouraging. Perhaps online is the better route.

Hearing about how you love your partner no matter what is inspiring. I do hope to find the love you all speak of.

Thank you again for your kind words, I will always think of them.
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Old 05-04-18, 06:33 PM   #6
Cupcake
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Default Re: Worried about being alone

Hi Rainbow


https://en.hdyo.org/


The youth link - I am sure you will find some help and support from this community of youngsters. Xx
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Old 16-04-18, 11:18 AM   #7
Ange<3
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Default Re: Worried about being alone

Quote:
Originally Posted by Rainbows1034 View Post
I am in my mid 20s and my father has Huntingtons. I have not been tested. I am worried about my future- will someone still love me even if I could be sick? I never thought about getting tested until now. I am worried one of my siblings is already showing symptoms.
Hi rainbow,

I am also in my mid 20's and my Father had Huntington's disease. I decided to get tested last year and was told I had inherited the disease. To be honest I was not really thinking about getting tested it was more everyone else telling me to because they did not think I had it and my partner wanted me to on the terms that we would split up if I did as he said he would not be able to stay with me. When I found out it broke me and I could not get over how my body had let me down. I think because it can go completely one way or the other itt was so hard to digest and I was so angry wondering why it had happened to me. I instantly regretted my decision and went into some kind of protective bubble for a good few weeks and my family was extremely worried about me thinking I would be like that forever. My partner stayed with me for around a month then finished with me which I knew was coming because I could tell he wasn't even looking at me as the same person anymore he was picturing what I could become like. To me the disease had ruined everything good that could have happened to me and ruined my life. After 1-2 weeks apart he come back to me and said he wanted to be with me for life and thought the Huntington's mattered to him but he had realised it didn't and all that mattered was that he loved me. He said he would care for me if it eventually does come to that.

Now at 7 months since receiving the news I have my good days and my not so good days. I still think about it so many times everyday and the slightest twitch or mistake at work and I'm thinking oh god this is the start of it. Sometimes I wish I hadn't of found out but then I'm also pleased I did because it can be just as scary living in the unknown. I have come to terms with it a lot and its been a complete roller coaster ride. I was turning in to this horrible person that just was not me. I had no sympathy for anyone's problems which is not like me. I work in a GP surgery and I was sick of people shouting at me because we had no appointments for their cough or cold and I used to think to myself I wish that was the worst of my problems you don't know how lucky you are. I could see myself turning into someone I really did not know and did not like. I was literally thinking there was no point in being here and just at such a huge low.

Anyway I eventually realised that I was not helping myself or anybody around me by the way I was going on. I managed to get myself in to a good frame of mind. I went for this thing called Reiki which is supposed to be a form of spiritual healing which I was completely sceptical in but it helped me get in to a better frame of mind. (Im not saying this definitely works and has not 'healed' me im just saying for me it helped with my frame of mind).

Sorry for going into such detail with you. I just think its such a life changing decision and its important for you to know in detail how it feels living with a positive diagnosis at quite a young age. I thought I had prepared myself for the worst and was saying I thought I had it but there still must of been that glimmer of hope there because my results day literally crushed me at the time.

It is perfectly natural how you feel about meeting someone. I felt the same, you kind of put yourself down in a way thinking no one will ever love you with the possibility of getting this disease. I stayed in a 10 year domestic violence relationship before this thinking I would never find any one else that would accept me for what I could possibly become but I've come to learn that that is really not the way we should see things and wasted a lot of my life unhappy. Do not settle for anything less than what you deserve. If you tell someone and they walk away than that is there loss, not yours. I'm sure someone will see through the possibility of you having Huntington's but the main thing to focus on is yourself whether you find out or not. Whatever it is you decide to do do not let this disease hold you back! The main thing I learnt in this whole thing is that either way you are still you. If you need any more questions answered do not hesitate to send me a message. You are certainly not alone :).


Big hugs, Ange xx
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Old 16-04-18, 11:40 AM   #8
Ange<3
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Default Re: Worried about being alone

Oh and I forgot to say I can now see myself turning back in to my old self again. I still have a little way to go but I have been letting my hair down more and having a laugh. It certainly has not ruined my life and I simply will not let it. If you did find out you had it you will think you will never ever be that person you once were but believe me you will be and you will be just fine xx
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