Shhh… It’s a secret

You might be wondering why you don’t really hear about Huntington’s disease elsewhere. Part of it, as I said in my previous post, is that it is rare. Few people have it, so few people care or talk about it. But there are other reasons it is such an uncommon and taboo subject. 

Many people actually keep their diagnosis a secret. In days of old, symptoms of HD were justification to go to a mental facility, so you can imagine how many people wanted to discuss it back then. My family didn’t know what the disease was when my great grandmother was afflicted by it. It was not until my grandmother was diagnosed that people began to put together the chain of events that had preceded it. My mother was totally unaware of the risk of the disease to herself until my grandmother was diagnosed and the doctor explained it to her. We kept it as a secret for a variety of reasons.

Firstly, insurance companies are not forgiving or understanding. You tell them you have a genetic disease, and, before the Affordable Healthcare Act, you would be denied coverage faster than you could blink. Now you just have to pay through the nose but they can’t deny you coverage. My family didn’t want anything on any type of record to show a history of Huntington’s disease because it could have been grounds for me to be denied insurance in the future. 

Second, given its historical connection to mental facilities, it isn’t a comfortable conversation to have. It is like talking to people about depression, bipolar disorder, obsessive-compulsive disorder, or post-traumatic stress disorder. Mental health issues are taboo subjects in this country and have been for a long time.

Third, it is an ugly process to watch, and once people know you have it, they watch your every move like hawks. It is hard when you are already questioning yourself about whether you have it, it is harder when everyone else is watching you like you’re under a microscope, analyzing your every stumble and quiver. It makes it difficult for you to be comfortable with whoever is doing that, so the fewer people you tell, the less you have to worry.

A lot of people with HD today still don’t like to talk about it for all of those reasons. That is part of why writing this blog is so important to me. In order for us to get the funding to find a cure, more people have to be aware of the existence of the disease with the first place. We have to bring it out of the shadowland it lives in and out into the daylight. We have to talk about it, and the more people who join in to that conversation, the better. I have nothing to lose by telling you about myself and my connection to this disease, but if I keep it a secret, if no one ever knows, I could lose a bunch of my family, myself, and maybe my children to this disease. I, for one, am not willing to let that happen.