When you spend years of your life hiding something (that Huntington’s was in my family) that feeling of shame sticks with you. Even after I made the decision to stop living in secrecy it was still there, accompanied by a huge amount of fear.
So every opportunity I have to share my story is special to me, especially when people are thankful for my openness.
Last week I had the absolute pleasure of being invited to speak as a patient advocate at Wave Life Sciences in Boston.
I told a story I had never shared before. A story about my daughter growing up and growing stronger paralleled next my dad growing older and getting weaker because he is living with Huntington’s.
After my speech people came up to me and said:
Thank you for connecting your story back to us and the work we do.Sometimes I lose my motivation and you are my inspiration now. I am going to think about you.Thank you for being so open and sharing your life with us. I have a hard time doing that.Often times sharing my story is so emotionally difficult and I always ask myself “why am I putting myself through this stress?”
Those comments are the reason why. Because when people say things to me like that I know I have made a difference. I am doing my part to help make the world a better place.
Thank you to all the staff Wave Life Sciences for listening to my speech and for all the hard work you are doing to find a treatment for Huntington’s disease.
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