Breaking the Cycle of Denial with Genetic Diseases
Sometimes I find myself in a spiral of guilt. I look at my two little babies and my husband and just feel awful for them. I don't want them to feel the burden of caregiving. I wouldn't wish this position on anyone. I know that without a medical breakthrough, I will eventually develop Huntington's Disease. I will become completely unable to care for myself.
When a disease runs in your family, you're scared shitless. You watch relatives decline and suffer and it's like a mirror into your future. The only positive of genetic diseases is that we are able to learn from our parents and grandparents. We are able to prepare in ways that previous generations were unable. I suppose that's the silver lining in it all.
My mom followed the path of denial. In 1993, scientists were able to isolate the HD gene meaning that individuals were finally able to be tested for the gene that leads to Huntington's Disease. My mom was tested in 2013. That's 20 years. That's a long, long window that my mom had the opportunity to be tested but decided not to. Now that I've been tested for the gene myself, I completely understand the desire to not know. It's heavy to carry around that knowledge every day.
The downside of denial with genetic diseases is that it leaves your family or other future caregivers completely unprepared. There's no right answer in this. On one hand, if you don't know there's a fatal genetic disease in the family, you get to enjoy the blissful ignorance of a "normal" life. But on the other hand, you're ultimately left floundering when it comes time to become a caregiver or go through testing yourself.
It's easy to look at my mom, go to that dark place and think "that's going to be me." I try not to think that way but it's completely natural and happens often. The difference between me and my mom is that I'm not following the path of denial.
I'm open and honest about HD. I'm involved with the local HDSA community, see my HD doctors regularly and try to stay informed about any medical breakthroughs. I've told my doctors and my family that I want them to tell me when they see symptoms of Huntington's Disease.
My therapist actually suggested creating a binder for myself similar to the binder that I use to stay organized for my mom. The binder has all of my insurance information, contacts and anything my husband, kids or other family members would need to take care of my future needs. My goal is to ensure the caregiving process is as streamlined as possible for them. Caregiving is stressful enough as it is, I don't need to add any additional confusion to it.
Although my kids are still too young to really understand HD, they are growing up around the HD community. We attend the annual charity walks and see my mom at least weekly. As they grow, we plan to tell them about HD in ways that are age-appropriate. They won't be blindsided if and when I start to decline. We have looked into resources that can help us along the way including HDSA's guide to Talking with Kids. As we were fortunate to do IVF with genetic testing for our babies, we know that they do not have the gene which eliminates a tricky conversation.
As always, I hope I can look back at this blog post in a few years and think "holy crap, I'm so glad they found a cure." But at least we can be prepared.