Thursday, October 11, 2012

Why are social situations hard for people with MS?

Julie Stachowiak, PhD

For a long time, I have felt uncomfortable in certain social settings. Many parties bring back feelings of being in junior high school, when it seemed like nothing I said was exactly right. Even in smaller groups of people, I tend to feel like I am frequently "missing the moment" where a certain comment would be appropriate, only thinking of the perfect thing to say later. I spend much of my time in social situations trying to figure out why the cadence of the conversation often seems "off," pretty sure that I am a big part of the problem.

Recently, I have taken the approach of being quiet and listening to group conversations or talking to just one person at a time, only truly comfortable if I know the person well and there is not much background noise. Turns out there is a name for this phenomenon: impaired social cognition. It also turns out that MS might have a big role to play in this particular problem. I first looked at research about this topic a couple of years ago, in an article I wrote, Are People with MS "Socially Disabled?"

New research on this topic is being presented here at ECTRIMS 2012.

Social cognition is basically how we think about other people. Even though we are not usually aware of it, humans are constantly gathering "information" about other people – we look at what they are doing, what they are wearing, and all sorts of other things about their appearance. We listen to their accents, their choice of words and topics. We may even be close enough to smell their perfume or sweat.

We then (again, usually subconsciously) process this information and it guides us in what we think about these people and, in turn, how we feel about them and behave toward them. As we interact with them, we continue to add information to our mental files and further hone our feelings and behaviors around them.

A group of German researchers wanted to investigate whether social cognition was impaired in people with MS, as it is well-known that MS causes cognitive dysfunction, as well as psychiatric symptoms such as depression, both of which can impact relationships with other people.

They compared 45 people with MS to 45 people without MS (controls) by having participants watch “Movie for the Assessment of Social Cognition” (MASC) and using a standardized test. The people with MS also completed a short neuropsychological battery. Here is what they found:
  • The people with MS demonstrated significantly impaired social cognition when compared to the people without MS.
  • Performance on MASC was moderately correlated with cognitive function (namely verbal memory and executive function) in the people with MS. 
  • However, even people with MS without cognitive dysfunction demonstrated impaired social cognition.

What does this mean for us? In a way, this research makes me feel better about the situation. It gives me hope that I am not just "socially weird," but that there is a real reason for my awkwardness in some settings. This is my takeaway message from this research:
  • Don't be too hard on yourself. It's not your fault if you find social situations difficult. 
  • Low-stress, familiar social situations will probably be much easier and more pleasant. Nothing is wrong with having a couple of good friends and enjoying them, without striving to have a crowd of worshiping fans. 
  • Make social situations work for you the best you can. If you cannot be the life of the party, at least make the party pleasant by finding people you enjoy listening to or spending it with one or two people. 
  • Remember, life (for most of us) is not a stage. The things that matter usually are the small moments with the right people.


  1. great blog :) maybe if I recalled peoples names it might be easier too haha

  2. good article...just moving around a social environment can be a challenge, put social cognitive into the equation and it can be very stressful.

  3. So happy I read this.
    Last night I went to dinner with friends and there was a very loud band playing in the "background".
    While my friends definitely enjoyed the company and could make decisions about what to eat, listen to the server, etc - I felt out of place. They were laughing at jokes that I just didn't get, I couldn't focus on anything anyone was saying and I felt so out of place.
    This makes me feel more "normal" if that makes sense.
    Thanks for writing!!

  4. So true ... difficult to blend into a conversation with loud noisy backgrounds, and hard to know how to answer intrusive questions, and as hard to accept some not asking anything at all. We really are enigmatic, aren't we?

  5. So true! I always feel like a fish out of water in social settings, even among friends and family. I especially seem to have trouble with the rhythm of my conversations being off. It feels like I'm off beat; the thought or appropriate response comes a few beats after the conversation has moved on to the next sentence. Or, sometimes I'll think of a response to a question, but then am unable to speak it out loud. Still, I force myself to face situations I know will make me uncomfortable. I don't want to become a recluse, and my family is pretty understanding of my challenges.

    1. You took the words right out of my mouth. I used to kind of be the life of the party in most situations. Now I am almost mute because I missed the point, didn't get the joke, or have nothing to say in response. And, I forgot what I intended to introduce to the conversation. But like you, I don't want to become a spider (haha) so I will just have to keep trying. Smaller, intimate groups. And one on one.

  6. I feel this a lot...especially at work. Don't get me wrong...i love my job, enjoy the people i work with, and have a relatively small work group. All that being said, when we have group meetings or training I feel like I can't keep up. It feels like those movie scenes when the camera pulls back suddenly and everyone seems really far away. Often they'll be talking about a subject that I know pertains to me and yet somehow I can't focus my attention on it, no matter how hard I try (and yes, this is more than just the usual zoning out that everyone does at work). Its a weird feeling...made even more frustrating by the fact that very few people can even begin to understand it.

  7. Grace. appreciate this very much.

  8. I have been having this problem for the past couple of years. I was diagnosed 5 years ago. I am also ADD. I have trouble going to places with loud atmospheres too. I have backed out of many invitations when I find out there is going to be a band or loud music. I love both but I can't "function" socially in those places. I really feel like I am starting to shut my self off from my friends and the places I love to be. I'm glad there is research being done. Now, if they can come up with some way to fix it. No more pills please though.

  9. It's funny that when I got diagnosed, seems my whole life makes sense now. There are so many articles about MS like this one that explains so many 'irregularities' of my life.
    My social behavior is exactly what is described here. I would prefer by far a one on one experience than let's say a party with 30 people. I often get stressed out during these parties (but also at a lesser degree with a one on one long conversation). Now that stress triggers my symptoms, it is more easily recognizable.
    Thank you for sharing this.

  10. Probably explains why if I meet a weird person, I over react to that person by being totally overwhelmed and not trusting and just wanting to completely avoid that person. This long run on sentence is a hint of how hard it is for me to explain something that is still a mystery to me. I appreciate this article so much because I thought I was going crazy.

  11. After my epic relapse on August 7, and being housebound because of vision, balance and heat - I missed the coffee shop and friends I visited at least twice a week. I decided to return for an hour or so - my husband has to drop me off and pick me up. I find myself just sitting, trying to stay balanced in my chair, trying to keep up with conversations, feeling awkward in a place I knew so well because I cannot walk around like I used to, pouring coffee, and even washing dishes to help my friend - the owner. I do better one on one in familiar surroundings such as my home. But I still miss a beat frequently in conversations with friends finding the words for me and finishing my sentences. I will visit to my coffee shop again, but try to avoid happy hour - this blog really helps me understand what has been going on.

  12. I used to be an extrovert...Lol it just took me 12 seconds of racking my brain to come up with the correct word. Had more friends and acquaintances than one could ask for. I have had rrms for about 15 years and I'm down to 2 friends and almost lost one due to habit of saying wrong thing at wrong time. Can't seem to guard my thoughts and have managed to alienate all my friends and some family members. Funny thing is if you ask me what I want for lunch or dinner I literally am struck dumb unable to decide even if my life depended on it. Needless to say shopping with me is a NIGHTMARE of the 1st degree. I too am unable to function at large gatherings and have repeatedly called a lone wolf, loner, party Pooper, etc. and then the excitement and stress will cause me to keel over further guaranteeing no future invites. Thanks for your blogs they make me feel less alone.

  13. I too used to be the life of the party. I am now 14 years diagnosed with M.S. and have experienced all of the symptoms and results due to them. I found a trick for those who have "name recall" problems...which I do frequently! I mentally run through the alphabet one letter at a time slowly.....when I land on the letter that the persona name stars with "usually" their name comes to me!

  14. as soon as my MS was diagnosed ,lots and lots of my questions regarding my problems got answered like why i used to fall anytime, anywhere without any notice, or why i couldnot walk straight but most of all the way i used to totally forget names of people, things even utensils of my kitchen was a big dilema solved finally.Now when i meet someone i try to make conversation on common topics , and ask for things by making shapes in the air with my hands . Believe me if u have a supporting family ,at times it becomes relatively bearable to live with this God forsaken disease

  15. I'm glad that I read this blog on it sounds exactly like me I am 32 years old is always an awkward in social situations I was diagnosed with MS at 24

  16. A very nice account of something many people with MS experience. If I might add something for the readers: your experience may be different. As with all research, this research looked at averages. Individuals, particularly individuals early in the disease process, may not have any difficulty at all. I anticipate that this will be studied again and that someone will make the effort to correlate this with length of time since the initial symptom and/or lesion load. Most importantly, it will be helpful to monitor your social cognition with a psychologist or other mental health professional. Get one on your team early so they can help you track how your status changes and how to best cope in this and other areas that are effected by MS.

  17. I found only weeks after diagnosed, job safety was a definite issue used for deciding to retire. I worked in the operating room and gave up all patient contact when safety risks were obvious to me. I loved, and became my job with over 20 years there. Retirement caused changes in how I perceived myself in all aspects of life as I knew it. If I could put words to my experiences, there was little, or no reference to these issues 15 years ago.

    Thank you for your blogs which I can relate to. The MS professionals need to understand what they can not phantom.