“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.”
This was just one of the many powerful quotations our contributor, Devin, recently wrote in his article The Loneliness of MS.
Even if well-meaning people say they understand how multiple sclerosis is impacting your life, it’s unlikely they do. And after reading this article, our community shared an outpouring of comments expressing their similar experiences.
Below are some of the thoughts our community shared:
I can’t get out and do things with others.
- “The part I find most difficult isn’t actually being alone but the lonely feeling you get because you can’t do the things you once did with family and friends.”
- “Fatigue alienates me more from friends than my obvious disability. Once you say no once or twice, invitations stop coming.”
- “I feel especially lonely talking about events. I have an event in November. My thoughts are consumed with if I’ll be up to it.”
- “Lost a lot of friends because of MS related issues, and I cannot go out and see those I do have often because of MS issues”
- “My friends are into a lot of summer events, but there are so many unknowns…I don’t know how hot and sunny it will be, I don’t know if there will be enough chairs for everyone…will there be easily accessible toilets…I really don’t want to ruin anyone’s day. So better stay home.”
I feel different from everyone—sometimes even those with MS!
- “People just don’t get it. I don’t feel ‘normal’ and it can get really lonely.
- “A friend introduced me to a friend of hers who was dx 20 years ago, so she can give me advice when I had just been diagnosed. I realized how we were not at all in the same place. It was nice to know she was out there, but I still felt alone in my experience.”
- “I suppose that’s why support groups are usually divided in at least 2 separate groups: DX less than 2 years ago, and all the others. I think either group could really overwhelm, and possibly upset, the other group.”
- “I feel very lonely. Even though I am not physically alone, I am still alone.”
- “My family tries so hard, but every time they accommodate me, I just feel different, and I feel alone.”
It’s not all loneliness, though: some of you offered solutions for easing those feelings:
- “I have made the choice to look at my MS disability changes in my life that everyone I know is going to face the same challenges as we all age, I am just ahead of the curve.”
- “Having a dog does help some. For me any way.”
- “Online communities make a huge difference. It’s not a perfect solution, but I often feel closer to my online friends than my other friends”
While it does not fix this impactful issue, many in our community took solace in the fact that they were not alone in feeling alone. Sharing your feelings and experiences with others online can be helpful. How about you?