Advocating for HD as a Way to Cope

In hindsight, my coping mechanisms probably started the day my mother told me that the illness my father died of was called Huntington’s disease. I had told her I was thinking of having another baby. She asked me to sit down as she needed to tell me something. According to Mum that day, they had decided not to tell me precisely what my dad had been ill with or died of because I already had children and didn’t want to worry me unnecessarily, when there was nothing, I could do about it. Testing wasn’t available at that time, so I would have worried about my children as she was doing.

At the time of my parents having children, the details had been sketchy around my grandmother’s illness and death, with nothing being said to me and my siblings about her passing which was when I was still a baby, and we were brought up not to ask questions, and although I was a curious child, I knew nothing more than she had been a good seamstress before becoming ill.

So, when Mum told me how they learned through Dad’s illness that he had Huntington’s disease, which he had inherited off his mother, I think I went into a kind of shock at first, but with acceptance that this was how it was. Mum told me how Dad’s treating doctors had drummed it into her head that the only way of not passing it on, was to stamp out having children. So, Mum was now advising me not to extend my family, and hope for the best that me and my siblings wouldn’t inherit it, as Dad did.

I remember going home and telling my husband what Mum had told me. He handled it well considering, and accepted it as I did, except I found myself over time, and I know in myself, that it was my way of coping, that this disease of which we had no control over, was passed down through the family as a test to our coping skills, our resilience. Not just those who inherited the disease, but the whole family, because each of us had to deal with it each time we were reminded of it, or had to do something about it.

It was around the time that testing became available, that my younger siblings started showing symptoms and I got tested, with a negative result. My children were adults by this time, so there had been more concern for them as well, with my result enabling them to live their life free of concern for themselves and wanting children. I was the eldest of five children. The three after me, all inherited it, with the youngest looking good at this point. He never tested, so has gone through his life just hoping he’d be okay.

Because I was the eldest child, I also became the bigger sister watching over my siblings, mostly from a distance, because I lived a distance from them, but was on the phone to each of them quite a bit checking in on them until able to move closer.

I have been advocating the disease since my mother passed, and again, I think it is my way of coping, having learned since her passing, so many facts that came to light while writing a book on Mum’s life, which ended up including both my parent’s family history, which brought about some disclosures of just how much Huntington’s disease affected past family as well. It was after Mum’s passing, that a distance was created surrounding remaining family, with most of my siblings still choosing to have children, rather than stop as was so strongly suggested, which is another reason for me to advocate Huntington’s disease. I cannot sit still and accept a good possibility of more members of my family inheriting it, without fighting for what’s needed while we wait for a cure. I did my own research through my family, other families, healthcare professionals/staff, then had a chat with Huntington’s organizations confirming education of Huntington’s disease to healthcare staff and doctors was needed, and focused as best I could in getting that out to them, from a family perspective and providing other information to give insight into the disease and how it impacts. The HD organizations also give education now too, at a cost.

This is how I have coped. Without it, the guilt may have taken over, as there has been plenty of opportunity for that throughout my knowledge of it existing.

Kathleen Langleyi

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