Living with multiple sclerosis (MS) can be very isolating. This condition often creates feelings of being disconnected from others and the world. Many feel the longing to belong and forge relationships as they could before their diagnosis.
One of the MultipleSclerosis.net contributors, Cathy Chester, recently published an article about MS and the feelings of loneliness—and how they are different from just feeling alone. Cathy’s words really resonated with our community members, and we received a lot of amazing feedback about how other people deal with feelings of loneliness and MS. Here’s what they had to say:
Enlisting the Support of Animal Companions
“My constant companions, my dogs, the best friends you could have. I am glad I have my dogs, they are far more loyal than any human being I’ve met in decades”
“I’m thinking of getting another dog. I had dogs all my life, I don’t have any dogs now, and I think they will be able to benefit me. Hopefully, this will add to curing my loneliness”
“I work, read, watch TV and spend time with my dog. He is almost 10 and he is the reason I fight for what I do have”
“The only thing that really helps is my dog. He’s older, so not as active. He gives me the strength to continue in this world. He makes the days better. I don’t go many places without him”
“I don’t mind being alone at home, in my own space with my cat”
So many of you talked about leaning on a furry companion when you’re feeling down. Pets can provide many benefits when living with a chronic condition, so long as you consider the means required to take on a full-time furry friend!
Finding Hobbies that Soothe the Soul
“I keep my mind occupied with my hobbies. I love TV and movies. I love reading for hours and hours at a time”
“I can still see enough to read my kindle, I have TV, and although not a fan of daytime TV, I have lots of DVDs. It could be worse, I know. So you just keep plugging along as best as possible”
“I can relate, some days are rough, but I try to sew a little every morning, which was something I enjoyed when I was young”
“Playing games on my tablet keeps my mind occupied most of the time”
While not all of our favorite hobbies are possible all of the time, many of you reported finding new hobbies or amending old ones to fit your new lifestyle. TV, puzzles, sewing, low-impact exercises like yoga or stretching, or even just watching funny YouTube videos can provide a distraction and pick-me-up when you need it the most.
Adjusting Your Outlook
“I truly believe that God expects me to do something that might help others cope. We did not have a support group, so I started one in my area and I am very active in our MS Walk each year”
“I do what my body allows me. I used to be very active, now I take my happiness from what I can do. I have a lot of naps now. I don’t stress over things, it’s no good for me”
“I still try to push myself to do everything I can as often as I can. I have found that a lot of times when I sit and plan out every step involved in going out, which we have to do within reason, I can become overwhelmed and staying home seems safer. However, if I take proper precautions and don’t overthink it, most of the time I end up feeling so much better that I went. It takes a lot of effort, but usually pays off”
While we can often feel like MS is an insurmountable journey, there are many of you who have shared small mental shifts that have led you to positive outcomes. A full mindset revolution may not always be possible, or even beneficial all the time, but sometimes, slowly embracing change, even when everything seems bleak, could be a step in a new, and positive, direction.
No matter how you combat your loneliness, just remember, you are not alone. Our community is always here for suggestions, or even just an ear to listen when you need. Please continue to share your experiences with MS-related loneliness with us, we love hearing from you!
“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?