The Challenges of Going It Alone With MS
Last updated: January 2022
Even under the best of circumstances, living with a disease like multiple sclerosis can be extremely challenging. The thing is though, there are an awful lot of folks fighting this disease that aren’t in the best situation. While there are a number of circumstances that could be classified as not having the ideal conditions to battle MS, today I want to discuss the issues that arise for the many of us that have to fight it by ourselves.
Living alone with MS: Practical problems
Being alone in your fight with MS can mean a lot of things. Some folks don’t have the literal help that they need to take care of themselves or maybe have help, but not enough of it. The many ways that MS can affect our bodies can make the basic everyday tasks of living incredibly difficult. Making and getting to appointments can be a challenge, cleaning the house can be incredibly daunting, and even feeding ourselves can seem impossible at times. Buying groceries and cooking? With fatigue, pain, numbness, and many other symptoms? I imagine that a lot of us don’t eat well because it’s a massive challenge.
There are times that what should be a simple act, like showering, can destroy our plans for the day so it’s no wonder that the simple tasks of living can be troublesome. If you don’t have help with some of the most basic of chores, life with MS can be a massive struggle. MS can make surviving an incredible and exhausting challenge.
Struggling to make connections
For others, maybe they have the caregiving they need, but there’s no one around to make an emotional connection with. I’ve said it many times, MS is a very lonely disease. Its debilitating effects can make it very difficult to have a normal social life. The illness also has a tendency to wreak havoc on all sorts of relationships. Constantly canceling plans, mood swings, no longer being able to relate to others’ lives - all of this makes it difficult to keep people around.
Not having many relationships, whether they be friends, family, or otherwise, has a serious impact. It’s no wonder that people with MS experience higher and more severe rates of depression. A solitary life is incredibly difficult. I’m sure there are many that would say that having relationships, our connections to other people, is the whole point of life. It’s why we keep going, it’s what makes life worth living. When you don’t have that, life can be very hard. When you don’t have that and you have to live with a painful disease, life can seem pretty pointless.
This is an important topic for me because I live with these issues. I live alone with my dog, with no family or significant other to speak of. I am incredibly lucky to have a few great friends that help me out (even just picking up a few groceries while they are shopping for themselves basically saves my life). They have their own lives though (and in recent years, I’ve had to depend on them less and less). I’ll tell you, it’s challenging and not the most pleasant life. The everyday tasks I need to do just to keep me and my dog alive are so incredibly taxing. Aside from that, I mostly interact with my dog; he’s great, but not exactly a great conversationalist.
I’m far luckier than so many people in that I usually can get out of the house and see other people at least once a week. The time between those days is a challenge though. Nighttime is especially tough (as I’ve said, for me, the night is dark and full of terrors) and that’s when my situation really hits home.
Loneliness is crushing but it’s also evil. Loneliness will constantly whisper in your ear: "you aren’t good enough"," "no one cares about you", "you are worthless", "you deserve this", "it’s all your fault". Those whispers seem especially loud at night. The army that multiple sclerosis throws at me includes so many dangerous opponents. Pain, vision problems, confusion, numbness, spasms, etc. The elite soldier in MS’s armed forces is loneliness though - that’s been the toughest opponent I have ever fought.
My situation isn’t great but so many people have it even worse than I do and that’s why I bring this topic up. Being alone and surviving MS is incredibly difficult. If this is your experience, hang in there. I survive by trying to think of it as a storm I need to weather. I try to believe that things will improve. You have to find something to hang on to and I hope knowing that you aren’t the only one who is going it alone helps you feel a tad less lonely. There are lots of us out there.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
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