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Re: [huntington's at risk] Sammy

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  • Debra Ward
    Hi Sweetie, You are brave !!!!  HD is the dirtiest word in your home...you lost your Mom to it and I am so sorry for your loss.  Let your family know that
    Message 1 of 6 , Nov 30, 2009
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      Hi Sweetie,
      You are brave !!!!  HD is the dirtiest word in your home...you lost your Mom to it and I am so sorry for your loss.  Let your family know that you needed to find out if you COULD have the same fate as your Mom that's why you did it.  My son-in-law wanted to know and he tested positive too...he's 42.  He quit his job to go to school full-time to become a Doctor, his life is going on.  Due to his bravery my daughter will not have any children she has no regrets being with him she loves him so very much.  Family is so important let them know. A while a go, that doesn't matter now, little bit ago, there's no need to tell them 3 years if you feel that will hurt them.  The important thing here is you need your family, they will not be mad at you....I promise....if they do get mad it's the disease not you Sweetie.  Your sister might not give you the support you are looking for at first, she too will be scared.  I wish you all the luck in the world.
      My God bless you and your family

      From: lauren steffan <laurensteffan39@...>
      To: huntingtonsatrisk@yahoogroups.com
      Sent: Sat, November 28, 2009 3:32:49 PM
      Subject: [huntington's at risk] Sammy


      Hey Sammy,
      My name is Lauren and my situation is very similiar to yours. It is difficult having Huntingtons Disease in my life. I believe that you know the exact thing to do in order to get through this difficult delima of getting tested for this disease at such a young age. I think you are brave. I think you will find peace with what you are dealing with as soon as you let go.  I read your original posting and thought that what you wrote was extremly powerful. If you do not mind I wolud like to quote you in a paper I am writing. If you need anything you can always email me at laurensteffan39@ yahoo.com. I hope to hear from you soon!
      --- On Sat, 11/28/09, Michelle Routhieaux <whatnomuffins@ juno.com> wrote:

      From: Michelle Routhieaux <whatnomuffins@ juno.com>
      Subject: Re: [huntington' s at risk] Re: I need your help
      To: huntingtonsatrisk@ yahoogroups. com
      Date: Saturday, November 28, 2009, 6:52 AM

      You are very strong to have done it alone for so long. I agree very much that you need a support system, but I don't think telling your family is a necessity if you don't want to or if it would negatively impact YOU. Recognize that I did not say negatively impact THEM. Because it's not about them. It sounds like it's important to you to tell them though. It's eating away at your soul.
      You're right. They might be angry. And that's okay. You can't force them to deal with their own HD issues, but you have every right to let them know what yours are. Your feelings matter too. You may have done it behind their backs, but you did what you needed to do to take care of you. That's important. I think the expectations you go into the conversation with are key. If you're expecting unconditional non-angry love and support, you might have a problem. But if your goal is just to be heard, to let them know whatever it is that you need them to know, it might be easier. I-statements tend to help with that. What I mean by that is phrasing everything so it relates to you and not them, even though it really still does.
      I just read back through your email and I was thinking about letters. Much of it would be good for them to hear. When I have to, or choose to, tell people things that are hard for me or things I'm really emotionally charged about it really helps me to write a letter, and then read it to them. It sounds kind of odd to some people but it helps me to know what I want to say in advance and to be able to have it in front of me, to not have to make it up on the spot or think on my feet. I may not prepare how to react to their reactions, but being able to just get through reading the letter and know that no matter what happens I at least got to say it helps tremendously. You can't predict or control the outcome, but you can be heard. I hope that helps. We're all here for you.
      PS - I wouldn't feel ashamed about not telling your family. It sounds like a matter of survival. And I understand the life of secrets. It's horrible feeling like such a huge part of your life is taboo, even within your own family. Telling those secrets is scary but oddly liberating. The people who taught me to keep secrets don't like it but it makes me feel a little more free, less ashamed, less caged. And isn't it odd how the HD that was your family's secret has now become your own. Let it go. You can do it. And the guilt of testing behind their backs? I think telling them will help that too.
      > As I am sat here just thinking about what I am about to set in motion i feel physically sick.
      > I am 24 and when i was 20 i tested positive for HD. My Mum died of HD when i wa
      17 and from then on Huntington's was never spoken about in the family - it's like the dirtiest word you could ever bring up and buried so deep down under the ground that sometimes you daren't even think the word "Huntington' s". I tried to broach the subject that I wanted to be tested with my Dad and sister and they wanted nothing to do with it. I however, couldn't exist not knowing if I had it or not - it was all I could think about - so I decided to get tested against the wishes/knowledge of my family. I had the idea in mind that surely i would test negative and then i could deliver the happy news... WRONG; i tested positive and hence have found myself in a pickle. How to tell my family.
      > Much to my shame it is now 3 and a half years down the line and for want of not hurting anybody i have not told them i have it. I have hidden this secret so deep down and it's slowly eating away at my soul now.
      > What do i do? How do i tell them? They will be so angry when i tell them how long i've known for - but also - i did it behind their backs... even though i felt like they left me no choice.
      > I appreciate any feedback.
      > Sammy

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