The Loneliness of MS
Content Note: This article describes depression. If you or a loved one are struggling, consider reading our mental health resources page.
Suffering from multiple sclerosis often involves enduring a number of tough physical symptoms (numbness, weakness, pain, etc). While these are all awful, I want to talk about one of the psychological issues that those with MS, or any chronic illness, are forced to deal with: loneliness.
When I speak of loneliness, I don’t necessarily mean being physically alone (although that can certainly be included here and can be a cause). I’m talking about that feeling of loneliness, that hollow emptiness and unhappiness you have inside. It doesn’t matter how many friends you have or how many people you talk to. It’s a despair that has a number of causes and can be downright dangerous if not addressed.
It's not easy to admit you're feeling lonely
I’ll come right out and admit that feelings of loneliness are something I struggle with constantly. That isn’t an easy thing to admit. If you even casually knew me, you might think that’s crazy. I have close friends, I have an awesome wife and dog. I try to get out as frequently as possible, and if you see me out or even in pictures, there’s usually a great big smile on my face. To say that I suffer from loneliness doesn’t seem to make sense. There are so many times, though, where I sit and think to myself that I’m alone, that no one really understands me.
As is often the case with those who suffer from chronic illness, what you see on the surface is nothing like the turbulence behind it. Like many suffering from multiple sclerosis, I am on disability. That means that I have to spend a lot of time by myself. While at times that can be awful, that isn’t exactly the only reason I say I’m lonely.
More so, it’s the fact that I’m on disability and not able to work that gets me. I think one of the core causes of loneliness is being different than everyone else (or at least how we perceive other people). Most people work and have a career. The longer I am on disability, the more I start to have trouble relating to those who aren’t, and the more I worry about them not being able to relate to me. Most people don’t want to be different from what’s considered the norm.
Dealing with fatigue and other invisible symptoms
Like many with MS, I suffer from bad fatigue. Most people don’t truly understand real fatigue. It’s not a matter of just being tired. No amount of sleep or rest will help it. Fatigue is a force, an excessive and uncompromising heaviness pushing down on every part of my body and mind.
When you have real fatigue, the simplest of tasks feels like trying to move through quicksand. In many ways, it’s the most debilitating of symptoms. If I’m having trouble walking and need my cane or wheelchair, I can still function. When the fatigue is bad, I can’t do anything. Even trying to make it to the bathroom or taking a drink of water can be difficult. Fatigue makes me feel trapped in my own body. Being physically alone can be tough, but being alone and being unable to really function is a major reason I feel loneliness.
Multiple sclerosis is full of invisible symptoms like fatigue. Cognitive impairment, pain, vision issues are all real problems many face on a daily basis. Invisible symptoms are easily dismissed by many people. Can there be anything more isolating than someone not believing you because they can’t see your problem? Even just suspecting they don’t believe you can make you feel alone. If there is one advice I can give those without MS reading this, it’s to believe us and show us you believe us.
Missing out on social events
Obviously visible issues can lead to loneliness, too. Being unable to attend events because of accessibility or temperature can certainly be a common issue for people. Both of those are issues for me, too. I use a cane and get around well enough, but there are some events that I’d normally attend that involve taking a lot of stairs. On a very good day, I’ll give them a try (and suffer from it later), but there are many days where I know I can’t even attempt them.
Same thing with warm temps, if I know it’s going to be hot, I end up skipping the event. Think of how many things take place outside in the summer: a lot. I’ll use a cooling vest but even with one, warm temps can be disastrous to me. So not being able to attend events with others can certainly be a source of loneliness. Even if you do make it out and need a cane, wheelchair, cooling vest, etc. you tend to stand out. Again, it’s those differences and not being like others that can cause feelings of loneliness.
The snowflake nature of MS can also cause its share of alienation. With the disease affecting everyone so differently, we are often prone to hearing people saying that they know so and so who has MS and then explain that they aren’t that bad. The person doesn’t mean to be harmful, but saying something like that can seem very dismissive and cause some inner turmoil. Even in MS support groups, you may talk to numerous people and they may not have the exact symptoms you have. That can be scary and isolating, too. Even among others with the disease, you can be completely alone with your symptoms. That can have some profound physiological effects.
Depression is common with MS
While there are many reasons why someone with MS can feel alone, it must also be pointed out that depression is a massive problem for those with the disease. The National MS Society even notes that clinical depression, the most severe form, is more frequent in those with MS than the rest of the population and even other chronic illnesses.1
For some of us, our feelings of loneliness can be directly traced to depression. It is unfortunate that there still seems to be a stigma with regards to depression. Luckily that is starting to go away, but confronting depression can still be hard for many people. Loneliness and depression are obviously linked; one can be the start of the other and vice versa. Depression can be dangerous, even life-threatening. If you think you are depressed, I urge you to seek help for it.
Finding support
Feelings of loneliness can be caused by a number of factors for those with chronic illness. For me, the biggest issue is feeling that no one can understand me, and that I’m alone with this unique disease. That isn’t the truth though, and it’s not the truth for any of us. It’s important to remember that none of us suffering with a chronic illness is alone. That can be easier said than done. There are a lot of support groups, both online and in-person, that can be very beneficial.
I certainly think everyone should seek professional help and speak to their doctors if they are feeling depressed and/or lonely. I also recommend getting involved with others that suffer from the illness. Sometimes just having someone to reach out to, even just to vent to, who you know understands what you are dealing with can make a massive difference. I’ve met a lot of folks with MS from all across the world and if I am having trouble, I reach out to them and vice versa. Always remember that you are part of a community. You are never alone.
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