Social Challenges of People with MS: Readers' Stories

If you sometimes feel lost in social situations, you are not alone.

At times, since my diagnosis with multiple sclerosis (MS), I have felt socially "not right." Don't get me wrong - I have never been an extrovert, much preferring enjoying the company of a very small circle of friends to a party. But in recent years, I have noticed that even in one-on-one situations, I often need to remind myself to stay "in the moment" and to think about what the other person might be thinking or feeling as they speak, rather than just relaxing into the conversation.

This feeling led me to do a little investigating into what might be going on. Based on what I found out, I wrote an article called Social Challenges of People with Multiple Sclerosis, about how many people with MS have a diminished theory of mind. Later, I followed this with an article that I wrote for the National Multiple Sclerosis Society, called Why are social situations hard for people with MS?, about "impaired social cognition."

I was interested to see how others with MS were doing socially, wondering if maybe only I was noticing that certain social situations could be challenging. I asked my readers if they felt "socially disabled" at times. I received dozens of responses and have included some of these below: 

  • Interestingly, my feeling of being socially disabled is variable from day to day. Sometimes it is more apparent to me than other times. I try to not think of it as a burden, but instead structure my conversations or talks in such a way that captures the other individual’s attention.
  • Wow, I do feel socially disabled sometimes, too. I know when it gets really bad that I avoid social situations, which is the wrong thing to do. My husband has taught me to laugh at it.
  • Most of my friends have learned to ask me if I am paying attention (if I seem to not be) while on the phone. They have figured out that I cannot multitask very well any more. They also have learned that with my busy social schedule I need timely reminders about events I am attending with them. I just laugh about my “brain like a steel sieve.” I also tell my friends to e-mail me about stuff so I can reread things and make sure it gets on my calendar.
  • I used to suffer from a lot of anger, anything would set me off, and I was hypersensitive to slights. Dealing with strangers could be, um, fraught. Diet, meditation, and exercise have cleared me up, but people should be aware that medications can make you angry, too. Modafinil (Provigil) makes me nuts, literally.
  • My family background is littered with people with Aspergers Syndrome (AS), autism and I have MS as well. I did not understand until the last ten years why I kind of did not fit in and then my son was diagnosed with AS and it all BEGAN to fall into place. A very slow process of recognition of the theory of mind and the ability to PROCESS the outside world properly. It takes a lot of LOVE on ALL sides to be able to adapt to and begin to understand people. If they cannot be bothered then walk away!! There is only so much energy to spare. Use it efficiently and wisely.
  • Yes! Yes! When I was first being diagnosed I was at a fundraiser, sitting at a dinner table with 10 other people, and I mentioned to my husband that I saw everyone’s lips moving but I could not follow a single conversation. As a result I sat there like a deer in the headlights. There was no way I could join in in any way. Others have mentioned that they notice when I am having a relapse because I become very withdrawn and quiet – I am so distracted by background noises that I can’t focus. Sometimes I just close my eyes and put in earplugs to remove all the input.
  • I have been volunteering as a Sunday school teacher for middle school boys. I find that I am more comfortable with my son’s friends than with adults. I get too paranoid and usually ramble on and say something totally irrelevant or reveal too much about myself or my life. I hate it. I also stutter when I am nervous and begin to sweat. I hope that I can soon get out to be more social and learn how to feel confident when talking to others, because after all, like a lot of MSers, I look normal. Thank God for this. I usually stay away from women in carpool and at activities where I know nothing about. I do not know how to stop my rambling, even in writing emails, just like this!
  • I always let people know about my main conditions, MS and fibromyalgia. I don’t have friends, per se, just folks on the Internet I talk to and some ‘friends’ locally. No one that actually visits or to go out and about with. I pretty much stay at home with my cats. Most know about the MS and if they cannot accept the way I talk with my speech difficulties and perhaps try to help me, then too bad. I have more things to worry about than being accepted by people that do not understand my condition. Mainly, I hate talking on the phone. Not only does it give me a headache, but it is difficult for the person on the other end to read my expression or see that I am especially tired, etc. My husband and daughter have actually managed to not only understand what I am trying to say, but sometimes even finish the sentence for me. My son still has no clue. I guess what I am trying to say is that if folks can’t take you the way you are, are they worth the time and stress – really?
  • Well, often I am not sure I said what I meant and equally not sure I understand what you mean! I do think the social challenges of MS can be a big problem with folks who are used to social life, but I have never really been a real social type, I have always been a homebody and loner. It can lead to a lot of heartache when an MSer tries to explain to friends and relatives just what is involved with this disease. Some are afraid to hear and will not accept it (like my son, a little bit), I don’t know why, it is not contagious! We can only do what we can, try to do what we would like to do, and in the end take care of ourselves the way we should. And for those who do not understand, we should try to educate them and who knows, they may then turn around and educate someone, who turns around and educates someone else, and so on.
  • I was diagnosed in 1976. I thought my “social ineptness” was just ME! I have a large number of “acquaintances,” but my circle of real friends has gotten very small – these folks understand me and my “quirks” and love me anyway, thorns and all! And yes, silence really is golden…
  • I frequently cannot find the words I’m looking for while having a conversation. It’s very frustrating and therefore I tend not to participate in conversations like I used to.
  • I’ve thought about the delay in processing that seems to impede my conversations a lot. I often have the feeling that people are looking at me strangely as I struggle to find a word or complete the thought I had just verbalized.
  • Wow! I didn’t know what was going on! Yes, yes, yes, the article Social Challenges of People with Multiple Sclerosis describes me to a T! I feel VERY “strange” at family gatherings (my husband’s) and crowded situations. I’ll start talking (trying to join in on conversations) and be CUT OFF by someone, as if my “two cents” didn’t matter!
  • Until I read the article Social Challenges of People with Multiple Sclerosis I thought that my life in raising four boys to adulthood had somehow hindered my interaction with women. I have never really had “girlfriends,” mainly because women like to talk constantly, on the phone, at lunch, etc. I do much better with email and very quick phone calls. I cannot follow a long conversation at all because I lose my thinking abilities totally. Now I can blame MS and not think anymore that raising four boys took some of the “girl” out of me.
  • Lately I’ve been very introspective and I feel like I have a history of “my friendships not taking.” You know I think I’ve made friends and when we are together I THINK we are having fun. But it seems I have to a lot of the initiating of getting together.

Bottom Line: Clearly, if you are having socially awkward moments, you are not alone. Human interactions and relationships are complicated, and MS seems to throw just enough little hurdles in the way to make some of the more subtle clues from others unreadable, as well as impede our ability to communicate fluidly and effectively. While I'd love to give you a cheery little one-liner of encouragement, the best that I can do is to tell you that some people will get it and some people won't. I can tell you that this has made me value and nourish the friendships with the people that have accepted me, quirks and all.

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