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Survivor's guilt

(6 Posts)
BeautyGoesToBenidorm Sun 08-May-16 23:22:16

I need someone to give my head a wobble.

I just tested negative for Huntington's disease, and I feel horrendously guilty about it. Not so much for my dad, who I would've inherited it from, but for the many people who have the disease who showed me nothing but absolute kindness during the testing process.

I feel like a fraud. I feel like I've wasted everyone's time.

Can someone please tell me to stop being an ungrateful bitch? I was LUCKY. I dodged the cruellest disease in existence. I knew that survivor's guilt is very, very real, but I didn't think for a second that I'd feel it.

Rezolution123 Sun 08-May-16 23:27:39

This reaction is normal.

sleepyhead Sun 08-May-16 23:33:44

Firstly, I'm so happy for you that you've tested negative. The mental pressure you must have been under waiting for the results would have been horrific. Be kind to yourself first and foremost.

This is in NO way of the magnitude of your experience, but after I had my clear result from amniocentesis when pregnant with ds2 I also felt guilt mixed with the relief of the result. I had been living with two futures and suddenly there was just one. I felt guilt about being "lucky" and for feeling happy about not having to go down the other path that I had been researching and coming to terms with.

Give yourself time for it to all make some sort of sense x

BeautyGoesToBenidorm Mon 09-May-16 08:51:02

I had been living with two futures and suddenly there was just one. I felt guilt about being "lucky" and for feeling happy about not having to go down the other path that I had been researching and coming to terms with.

Oh sleepyhead, this is exactly it. A year ago, we had no idea that Huntington's was even in our family. Then my dad was diagnosed, and everything we knew came crashing down. We were forced into a whole new reality.

I'm so glad your amniocentesis was clear. Believe me, I know the conflict you felt! And thank you for being so kind - your reply has comforted me more than you'll ever know x

Penfold007 Mon 09-May-16 09:08:35

I think you've been amazingly brave. You've coped with your dad's diagnosis, what it means for him and the family and youve looked your own (as well as future generations) future. I think your guilt is normally and even a healthy part of processing the information.

BeautyGoesToBenidorm Mon 09-May-16 09:55:03

Penfold, thank you for being so kind. The biggest part of my terror was for my little boys. I could've handled testing positive myself, but the guilt would've been absolutely unbearable if I'd passed the disease on to them.

I don't think I've been brave. I know I did the right thing by getting tested - I'm a need to know sort of person, I couldn't have lived in oblivion, not when I knew that the risk was significant.

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