When I was tested for HD in 2009, I knew that a negative test result would be just as hard for me as a positive result because of survivor guilt. I know guilt is the wrong word since it wasn't anything I did or didn't do that caused my siblings to have HD, but I still felt bad for my siblings who were not spared.
When I was at the 2012 HDSA Annual Convention in Las Vegas, someone said instead of calling it survivor guilt, we should call it survivor energy. That really resonated with me. Once I was no longer at-risk, I had more energy and motivation to become involved in the HD fight.
Out of everyone in an HD family (those who have HD, those who have tested positive, those who have tested negative, those who are at-risk, and those who are care-givers) we who have tested negative are probably in the best position to help fund support services for families affected by HD.
Most of us are still able to work, so we probably have more income. We probably don't have to worry quite so much about what the future will bring from a financial standpoint. Those who are not care-givers probably also have more time. We are the ones who should be planning fund-raisers and contributing to our local HDSA chapter.
For fund-raisers, it doesn't have to be something that brings in a lot of money. Even a couple hundred dollars helps. And more important, fund-raisers help spread the word about HD and give HD families much-needed social activities.
One thing that is easy to do is making a monthly contribution, either by writing the check yourself, making a payment each month through online banking, or setting up an automatic monthly payment through your bank.
I have pledged to make a payment to the HDSA Northwest Chapter each month during 2013, and I would invite others who have tested negative to consider making a regular donation to your local chapter. Instead of being paralyzed by survivor guilt, we can become involved with survivor energy and help pay for needed social work services, in-service training at nursing homes and assisted living facilities, and support group leadership.