Social Isolation and Motor Neurone Disease

I want to discuss the touchy subject of social isolation among people with terminal illnesses, especially Motor Neurone Disease. I've been feeling socially dead for quite some time now, although I understand that not everyone may feel the same way. Perhaps some have a great support system or other reasons for not feeling this way. In 2021, I thought everything in my life was going great until I received the diagnosis at 34 years old. When I first got my MND/ALS diagnosis, I withdrew from the world. I didn't see or speak to anyone for quite some time. It was my husband who shared my diagnosis with our friends and his family, which I didn't mind because I didn't have the energy to explain it without getting emotional. However, I had to tell my own family. It was hard to explain what MND to them because they had never heard of the illness before. At that time, when I told them, I still looked "normal," so they didn't really understand the seriousness of it, compared to now when I obviously look disabled.  

 

When my family, friends, and people in my circle learned about my diagnosis, their reactions were varied. Some offered their support, while others distanced themselves, unsure of how to respond. The emotional distance that followed wasn't abrupt; it was more of a slow burn. As my speech became faint and difficult to understand, conversations with some loved ones became strained, common interests with friends faded and I became the object of pity as my abilities changed. My physical abilities became a barrier to being social and connecting with people that I once effortlessly interacted with. I won't lie; it still makes me sad not getting invited to events that I know I would be invited to if I was well and physically able. Although I have communicated to my friends that large crowds overwhelm me now, it has been perceived as if I don't want to be in a crowd. Perhaps they already anticipated that there would be singing, dancing, and laughing, and that's why I don't get invited anymore. I understand; who would want to be at a party or gathering and not have fun? They probably don't want an awkward situation. One time, early in my diagnosis, I was at a party and the atmosphere changed when people who used to interact with me saw me in a wheelchair and didn't know how to react. I really felt the emotional disconnect. It's as if I had become invisible long before the disease could physically claim me. 

 

While being in solitude and mostly interacting with my husband, I've had plenty of time for self-reflection and personal growth. Engaging in hobbies and focusing on things that I can do has helped me fill the void caused by social isolation, giving me a sense of purpose and joy. I'm grateful for my family and friends who have remained supportive, and I'm also thankful for the new friendships that have formed with others who understand the challenges of Motor Neurone Disease. Although I may feel some social distance from certain people, I fully understand that life gets busy and everyone has their own priorities. 

 

For anyone facing similar social isolation, I am no expert, but hang in there and try to find new ways to connect. Be open with your loved ones about your needs, and don't be afraid to seek out new support networks. Honest communication can bridge gaps, and there is strength to be found even in solitude. Every day is an opportunity to rediscover joy and purpose, no matter how small the milestones. While MND may change the way we experience the world, it doesn't diminish the depth of that experience. Let's continue to celebrate life, adapt to new realities, keep fighting, and live fully despite the shadows.

Terminally Well,

Ally