"Since discovering I am gene-positive for HD almost four years ago, I've done my best to grapple with the reality of my doomed DNA in my own way: thinking, meditating, writing, and talking with my therapist. I've even participated in a few research studies because I care deeply about helping to find a cure. Most of all, I've been trying to live intentionally and experience as much as possible while I'm still healthy."
"Due to its high degree of devastation, HD is an illness that brings people together. But up to now, leaning into the HD community hasn't felt like a necessary step. I am asymptomatic, which means the involuntary motor symptoms that characterize HD haven't manifested yet. In that sense, I don't feel like I'm in the "in group." In all honesty, it's been kind of reassuring to be on outskirts, because it means the harbinger of death hasn't come for me quite yet."
An asymptomatic, gene-positive individual for Huntington's Disease has coped through thinking, meditating, writing, therapy, research participation, and intentional living. The individual recently joined a Facebook support group after years of avoiding groups despite long-time Facebook use. Isolation originated from early childhood trauma and produced a pattern of self-reliance that hindered seeking community support. Asymptomatic status created a feeling of being an outsider within the HD community because symptoms have not yet appeared. The individual fears that joining community spaces confronts the reality of eventual decline while also acknowledging potential moral and practical support from others.
Read at Psychology Today
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