Nothing in Common
For a lot of folks who get diagnosed with Multiple Sclerosis, life changes a lot. Not everyone and not always right away, but many do eventually get their life flipped around a bit. I am one of those people, who around 15 years or so post-diagnosis, ended up on disability, no longer able to work at the career I spent most of my life preparing for. Some people don’t end up on disability but still struggle to keep up with life. When everything becomes exhausting because of fatigue, it becomes difficult to function like everyone else. No matter what your specific situation, many people with a chronic illness like MS begin to feel like they have little in common with the people around them.
With most people
Generally, when people say they get along with someone or say they like a person, one of the common reasons is because they “have a lot in common”. Having MS can start to erode all the things you had in common with people. There’s a reason we like to say “you don’t get MS, until you get MS”, because it’s very hard to understand what life is like living with this disease. It’s hard to understand everything we live with, the pain, the fatigue, the cognitive issues, and all of the many, many symptoms that we can encounter. With so many of our symptoms being of the invisible variety, we often get dismissed (“oh, I’m tired too”), which really drives home the feelings of misunderstanding.
Understanding can be difficult, even among those with MS, because the symptoms and their severity can vary widely between those diagnosed. Occasionally, that even leads to disagreements and bullying among the MS population. So even among those that should understand us the most, we can feel different and alienated. Talk about something that can make you feel hopeless, wow, getting attacked by someone who should be one of the very few on the planet that “gets you” can really make you feel alone. When I see folks with MS that are doing better than me, sure, I am happy for them, but sometimes, I can’t help but be a little jealous too and a little upset that they have it better than me. The varying severity among those with the disease can be just another cruel aspect of it.
I admit, I find it harder and harder to relate to other people. I feel like I have less and less in common with others, particularly with those close to my own age. My body and life behaves more like someone much, much older than I am. As time goes on, I feel like more and more of an outcast from the world that everyone else lives in. I recently gathered with a group of long time friends. After hanging out for a bit, I started to feel extremely out of place. Their lives had become so much different than mine. The worst part of it is that I could see them all living the life I thought I’d be living at this age. Many were married, having kids, traveling, and excelling in their careers. All things I saw myself doing, and all things that no longer seem possible for me. That’s a hard pill to swallow, but, in addition to that, it’s made it harder for me to relate to them. Harder to talk to them and be near them. I feel like I have less and less in common with friends and family each and every time I talk to them.
MS can be alienating
I suppose people will always grow apart, that’s just part of life. This all feels a little different than that though. I wanted to bring all of this up, not to sound sad or sorry for myself or anyone else, but just to make mention that this disease can be especially alienating. As I write this, it’s Mental Health month, and while I’ve discussed some of the biological causes of depression, I think it’s important to mention this aspect of the disease too. The situations that this disease puts us in are often just as awful as its physical symptoms.
In an attempt to end on a high note, I will say that despite the many differences even those with MS have, I have met some truly amazing people with and because of the disease. I have met many people that I do have things in common with due to this disease. People that I wouldn’t have had the pleasure of knowing, had I not been diagnosed. That’s something to be thankful for.
Thanks for reading!
How well do people around you understand MS?