To this day, I have only talked to two younger people with Huntington’s who weren’t related to me. I know some resources could help me connect to others (like the HD Young Adult Conference), but I haven’t decided if I want to pursue any. The truth is, I don’t know if I want to be more involved.
I usually am very much what my mom calls a “joiner.” In college, I joined the sorority Pi Beta Phi; I was even on exec for two years in undergrad. I also joined the water polo team and a handful of other organizations. Having connections and a community has always been important to me. This is why I was initially confused about my hesitation to join any young adult groups.
After putting more thought into it, I realized talking to others about Huntington’s can be emotionally draining for me. One example is when I brought up that I tested positive for the Huntington’s gene in my very small Women and Gender Studies class. It was a night class, so I was always pretty tired by the end, but when I left that evening I felt like I hadn’t slept in days.
There is an argument to be made that talking about Huntington’s with someone who understands is cathartic. I have had instances where I found comfort in a shared experience. However, the times that come to mind are complaining with my friends about tourists at MIT (they tend to walk slowly in relatively small hallways) and other annoyances in life.
When it comes to feeling sad, I don’t usually find comfort in someone else’s words. It might be my argumentative nature, but I can’t stand a majority of common phrases used to comfort. My friends can attest to how much I hate the words “it’s going to be OK.” No one can promise that. Sometimes, it will never be OK, and the best you can hope for is that some things get more comfortable to carry. What does help is someone simply listening to me or hugging me. For both of these, I have great friends who are willing (even if it’s through a phone). I don’t necessarily need someone who is going through the same thing.
At this point in my journey, it’s an emotional risk to go to Huntington’s events. They are guaranteed to take a toll on me, but the benefit could outweigh the cost. I’m a pretty risk-averse person, so I’m still waiting for the cost to lessen or the benefit to be more certain.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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