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Invisible: A Huntington's Disease Story

On a recent shopping stop at the local grocery store, an old neighbour stopped to chat. It was basic small talk; the usual stuff, the weather, along with a brief comment about the state of the world, the usual stuff. The thing that perplexed me was that she didn't mention the death of my wife Sheila, a few months previous. In my mind I thought that maybe she didn't know or she felt she shouldn't bring it up, not knowing what my reaction might be. So I asked her if she knew that Sheila had passed. She answered that "yes" she had and expressed her condolences. Her husband had passed a few years earlier and I commented that what I found distressing was that after the initial death, most people had vanished, and that only one of my relatives had shown up to Sheila's visitation and that to be honest, it angered me as I felt that it was a concerted effort.

This woman was never one to be what you would call "warm", but even so, her statements that followed made how I felt about the sense of being alone seem as though it would be chronic. She told me that she found that people didn't want to hear about it and that if I persisted in talking about Sheila, that I would only alienate friends even more. I felt like I had been given a diagnosis for a terminal illness for which there was no cure.

For many in the Huntington's Disease community, this feeling of being avoided like the plague after the death of a loved one is all too common. Often, caregivers who are mostly family members have already been left alone by friends and other family members to navigate the HD journey alone and often without resources to have respite or even health care supplies. The stress and anxiety from this is often overwhelming. And when death occurs, even if family show up for any services such as a funeral they often don't hang around for very long so that those who are left behind have no support from supposed loved ones. It can be scary, lonely and can make you feel as though you must have done something terribly wrong; as though it is your own fault somehow.

I also found that social media exacerbated the negative feelings I had. For me, I actually felt like the world stopped turning, and feelings of loneliness invaded my whole being, but there were people out there around the globe who were known members of the HD community who seemed to be doing quite well. They seemed to have all the help they needed. They posted pics of new vehicles, nice trips and their moments of relaxation that I could never have had while accompanying my wife on her HD journey. While anything that came to me during that journey was humble at best I still would never have posted such things, taking into consideration those that might be less fortunate than myself. Whenever I dared mention to anyone about my situation there was always that reminder that there were people out there who had it worse than myself, so I stopped talking about it, feeling guilty, thus taking myself further into some abyss; a dark hole that I felt I could never climb out of. I smiled no matter how bad it got.

I felt invisible!

I began to feel as though most people simply lacked any ability to feel empathy, but very soon I realized that I was wrong, and that the former neighbour of mine was correct, although she didn't say why.

I came across an article from Psychology Today that actually seemed to explain, at least part of it, and it seemed to help explain why at least some of the people might leave you holding the bag in times of crises.

I won't go into that part of it here, but I have included the link to the article. It may help you as well to navigate your feelings toward those that you feel may have wronged you in any way.

And if you have had these feelings, please feel free to share your experience in the comments below and maybe sharing this experience will let you know that again, you are not alone and that how you feel is real and that it is okay to speak to someone, such as a psychologist or even your family doctor about how you feel. It took me awhile to come up with a word that would describe it. I hope that having a word to describe it will help you get the help that you need and deserve.




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