Social Challenges of People with Multiple Sclerosis

Turns out there is a reason why we might feel socially "weird" at times.

People with multiple sclerosis (MS) have many physical and emotional symptoms that can impede social interactions and a busy social life, including mobility problems, depression and fatigue. However, there are also more subtle issues that can interfere with our ability to socialize smoothly.

I remember seeing reference to a presentation about people with MS having a deficit in something called "theory of mind" a couple of years ago, but then I got caught up in dealing with my own physical symptoms and developments in treatments and kind of forgot about it.

However, in the past year or two, I have noticed that I sometimes have a hard time figuring out people's motivations and emotions. I chalked that up to being isolated away from adults at home with young twins, but decided to revisit the theory of mind concept after a couple particularly puzzling social interactions.

Theory of mind (ToM) is basically the ability to figure out what another person is feeling, thinking and what their intentions are. To get all of this stuff right requires a certain amount of cognitive and emotional processing to happen pretty quickly during social interactions. As many of us with MS know, cognitive dysfunction is a pretty big symptom and can certainly slow us down when trying to do things like remember certain words, cook a recipe, follow a conversation - basically, it can impede our ability to function "fluidly" in a modern world of multitasking and constant media bombardment.


According to two studies, it looks like these little cognitive "blips" can actually hamper our ability to relate to others, as well.

  • One Hungarian study showed that people with MS "had a deficit interpreting social situations and performing in interpersonal contexts," even though they did not exhibit symptoms of severe cognitive decline or disability. This was measured with tests to measure non-verbal social cues and a questionnaire to determine levels of empathy.
  • An Australian study also found that people with MS performed worse on the ToM tests than controls without MS. The people with MS also showed difficulties recognizing facial emotions of anger and fear. The researchers theorize that this is related to dysfunction in "executive processing" and slower information processing speed.

This has also been called "impaired social cognition."

So, where does that leave us? I have to say, I am not really that upset about this. It explains a number of my more odd conversations. It also reinforces my firm commitment to "be in the moment" when I am talking to people. I make a huge effort to tune in and listen to a conversation that I am involved in, turning off background noise, looking at the person when they are talking, putting more thought into my responses, asking someone to confirm my read on their feeling (if I have any doubt that I understood). People have recently told me that I am "a good listener," a title I would have never earned in my days of engaging in mental shopping and listmaking during conversations.

By the same token, I am pickier with who I talk to and what subjects I will discuss. These days, everyone has a complaint about politics, the economy, the environment - you name it, people want to rant. I have stated strict rules about things that I cannot engage in, although I have tried to do it with softer, kinder words. I have found that saying something like," Oh, I am afraid I haven't been following that very closely in the media. It probably is better if you use your time more wisely than talking to me about that subject" seems to put out any immediate need to share unpalatable views with me. Actually, upon reflection, people probably just think I am weird.

Read about what some other people with MS have to say about social challenges and difficulties: Social Challenges of People with MS: Readers' Stories.

Further reading on cognitive dysfunction:


Banati M, Sandor J, Mike A, Illes E, Bors L, Feldmann A, Herold R, Illes Z. Social cognition and Theory of Mind in patients with relapsing-remitting multiple sclerosis. Eur J Neurol. 2009 Nov 17. [Epub ahead of print]

Henry JD, Phillips LH, Beatty WW, McDonald S, Longley WA, Joscelyne A, Rendell PG. Evidence for deficits in facial affect recognition and theory of mind in multiple sclerosis. J Int Neuropsychol Soc. 2009 Mar;15(2):277-85.

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