A woman sitting alone in the dark.

When You're Fighting Alone

Living with a disease like Multiple Sclerosis can be a difficult task, particularly as you grow older. Having a good support system is crucial to living successfully with this illness. Not everyone has that though, and for some people, like myself, even having a good support system doesn’t mean we don’t sometimes feel like we are fighting this battle alone. I talk with a lot of people with MS, and I am often left with the thought that I have an interesting perspective as someone who has had the disease this long, is this age, and is single. With no family of my own and a career taken by my disease, I find that I face some struggles in ways that others don’t. So, I’m here to share, primarily because there are others like me, and no matter how minor we are in the grand scheme of MS demographics, you need to hear that you aren’t alone.

Making a lonely disease even more lonely

As I write this, I am 41 years old, I have had MS for close to two decades, I am single, unable to work, and have no children (though I very much treat my dog as my child). It can be argued that Multiple Sclerosis played a pretty big part in my current situation, but that’s not the discussion point here. Rather, I wish to discuss the difficulties that come with all of this. There are many times during which this combination of life statuses can weigh on me. In short, it can make a lonely disease seem even more lonely. It can also really make one feel like giving up and like there is nothing worth fighting for. I feel like I constantly have to manufacture extra motivation to keep on keeping on and to do the things I need to do to keep this disease at bay.

Losing my career

There was a huge chunk of my life where I poured my heart and soul into my education and then my career. My career was something that defined me, and I loved it. I was one of those lucky people who had a job that wasn’t a job to me; I thrived at it and genuinely enjoyed my work. In many ways, I am still mourning the loss of my career. It was something I devoted a lot of time to, something I was proud of. I guess without it, I have a lot less to be proud of, at least that’s how it feels.

A family of my own

That’s not the only thing I’m missing though. In what might seem like a surprise to many friends and family, I did always want to have a family of my own. As I’ve gotten older, I most certainly lament not having one. I feel like, especially what I’ve learned from living with this disease, that I’d have a lot to offer children in terms of advice. The reality these days is that I’m too old and damaged by MS to have a kid at this point. It’s OK, I’ve accepted it, that’s life. I do often think though that having children of your own must be a massive source of motivation if you have MS. When I talk to others who are struggling with the disease, I often want to grab them and say, “What about your kids? You need to pull it together for them; you need to go on for them!” I think that a lot when someone comes to me and tells me their spouse left them because of the disease (that happens way more than I care to think). I always think, but you have kids! No matter what happens to you, you raised or are raising these children, that’s something to be proud of! Perhaps that’s just the naïve musing of a single old man though (and sure, 41 isn’t old, but with nearly half of that life spent with MS, it sure feels much older to me).

Fighting to find the joy

As I said, I have a great support system. Wonderful friends (despite losing quite a few over the years) and great parents and siblings. That doesn’t mean I don’t wish I had more though. It’s hard to be motivated when you’ve no children, significant other, or even career. That’s kind of what I’m trying to say here. I find myself wondering why I am doing all this, living like this, dealing with the pain, falling all the time, the confusion, the being uncomfortable. It’s easy to ask yourself “what’s the point?”. Honestly, I still struggle with all of that, but that doesn’t mean I’ve given up, and you shouldn’t either. There are still a tremendous amount of joys in life. You may just have to work a little harder to find them. Maybe you get a hobby, or you help others, or maybe you even just take pride in fighting the disease. Just because you aren’t in the position that others are in, doesn’t make you any less important. Keep fighting and know that you aren’t alone. I have a feeling a lot of people are in the same situation as us.

Thanks so much for reading and always feel free to share!

Devin

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