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Julie  Stachowiak, Ph.D.

Are People with MS “Socially Disabled?”

By April 13, 2010

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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 got caught up in dealing with 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.

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.

What about you? Do you feel "socially disabled" at times? Any tips to share? Please use the comment section below to tell your story or share your ideas.

Further reading on cognitive dysfunction:

Sources:

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.



Comments
April 13, 2010 at 4:10 pm
(1) Sue Donolo says:

This topic really hits a nerve. I have felt socially disabled on many occasions. It’s hard to describe the feelings I have felt when trying to

April 14, 2010 at 9:49 am
(2) OMC says:

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 make them capture the other individual’s attention.

April 14, 2010 at 12:45 pm
(3) darcy says:

Wow, I do feel like that sometimes too. I know when it gets really bad I avoid social situations which is the wrong thing to do . With my husband he has taught me to laugh at it.

April 14, 2010 at 12:53 pm
(4) Donna says:

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 anymore. 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.

April 14, 2010 at 2:33 pm
(5) Max says:

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 wrangy, too. Modafinil makes me nuts, literally.

April 14, 2010 at 2:52 pm
(6) Charles says:

My family background is littered with people with Aspergers 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!! Only so much energy to spare. Use it efficiently and wisely. Just a thought!! Charles.

April 14, 2010 at 3:24 pm
(7) Sharon says:

Yes! Yes! When I was first being diagnosed I was at a fund raiser 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 realapse because I become very withdrawn and quite – I am so distracted by bacrground noises that I can’t focus. Sometimes I just close my eyes and put in ear plugs to remove all the imput. Cognitive issues are my main symptom when I have a flare-up (though balance issues are always present they are much easier to deal with). I have recently had fabulous results with the low dose naltrexone mentioned on your website. I am now able to return to work, drive and think clearly again. The future looks brighter. Previously I thought I was doomed to sit staring out into space. It is so hard for family and friends to get a handle on this symptom of MS, yet I felt it was really “devastating. Thanks so much for addressing this issue and the info on LDN.
Sharon

April 14, 2010 at 3:42 pm
(8) Debbie says:

As an older mom-54yo- of a 12yo son- i love to help out at school to keep me from staying home and getting depressed.
I am on SSD and unable to go out otherwise. I have been volunteering as a Sunday School teacher for Middle school boys. I find that I am more comfortable with my sons friends than with adults -women or men and teachers. I get too paranoid and usually ramble on and say something totally irrelevant or reveal myself or my life way too much to them.I hate it. I also stutter when I am nervous and begin to sweat. I am going through a separation divorce with a husb of nearly 20 years. He is not kind at all when I say something wrong or incorrect. It is because of him that I have not socialized as well. He has an alcohol and anger problem. i am trying to teach our son compassion and sensitivity to me and others that make mistakes without meaning to.
I hope that I can soon get out to be more social and learn how to feel confident when talking to tohers, 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 !

April 14, 2010 at 4:11 pm
(9) Jan Church says:

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 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 finishes 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?

April 14, 2010 at 5:49 pm
(10) Dusan says:

Yea i agree with u that this is not a big problem or not a problem at all. But u are looking into it wrong, if u want to be social accepted and not found “weird” u should probably be oposite of “good listener” and be a goof. If u try to listen to everyones blaber u may come off needy and be taged as second char in the story. U dont need tips for this “problem” just introduction to simple psychology

April 14, 2010 at 7:50 pm
(11) Jan Church says:

Well, I am not sure I said what I meant and equally not sure I understand what you mean! LOL I do think it 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. 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. Am I being lucid? I can’t tell, time for dinner and some down time.

Love and blessings to ALL of you, my friends!

April 14, 2010 at 7:59 pm
(12) Carolyn Richardson says:

OMG–I was diagnosed in 1976–I thought my “social ineptness” was just ME! I have a large number of “acquaintences” 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–even today the 50th Anniversary of MOTOWN!

April 14, 2010 at 8:54 pm
(13) Cathy N says:

I can think back on many situations where I was mortified while standing in front of a room of people talking and lost my train of thought! This was pre-MS but I was diagnosed within 12 months after. I frequently cannot find the words I’m looking for while having a conversation. It’s very frustrating and therefore, now that I think about it I tend not to participate in conversations like I used to.

April 15, 2010 at 5:02 am
(14) Terence Wilson says:

It took many years to get the social balance correct. I re-discovered an old acquaintance on the internet and was horrified when my attempts to re-new our friendship were repulsed — by his wife! So I sent an old photograph of us to a mutual friend asking him to forward it. We are now good friends once again. My advice is, “don’t mention the elephant in the room!” MS and its consequences may be important for us and our carers but not other people.

April 15, 2010 at 11:18 am
(15) Holly Blomberg says:

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. I wonder how much this phenomenon relates to lesion load and placement within the brain–lately I’ve been thinking about neurorehab and finding ways to take advantage of synaptic plasticity (the Einstein learning to play the violin idea). Maybe that’s something that could help our executive processing.

April 17, 2010 at 4:04 pm
(16) Amy says:

WOW. I’m with Charles (#6)….I also have MS AND a son with ASPERGER’S….very interesting correlation. I’ll definitely have to do more research into that…Julie: would LOVE to see you find out anything you could through your innumerable sources about any hypothesized relationships b/w autistic spectrum disorders and MS (genetically speaking). Personally, I don’t FEEL like I have the social problems; I always felt like I was actually MORE in tune with reading people than average. BUT–agreeably, it is possible that MS cognitive “FOG” could just be blocking me from seeing it!!

June 10, 2010 at 9:37 am
(17) Marlene says:

Wow! I didn’t know WHAT was going on! Yes, yes, yes, that 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! My oldest daughter (30) is really guilty of it!

June 13, 2010 at 12:28 am
(18) Dee says:

Most all of your comments ring true w/me. I was wandering if it is common for one to lose those whom were thought to be the closest of friends when one becomes ill. I have lost every one in my circle of friends (5) except for one. I have supported them through various tragedies of life for the past 20 yrs-loss of a son in the Army, death of a husband, personal illnesses, cancer, financial woes, and more. Our motto was: “We will stick together through thick & thin & sick & sin!” However; when I became very ill, I was shunned, belittled, laughed at, doubted, verbally abused, lied about & worst of all was that all this mistreatment took place during a clinical depression where I had become suicidal & looked to them for help. Some have since apologized for their behavior & believe our friendship should pick up where it left off before my illness worsened. I was told “We are so happy to have “Our Real Dee Back!” I tried to explain that all my MS symptoms are the “Real Dee,” but sadly, I feel they crossed the line of mistrust. Bc all relationships are built on trust, & I no longer trust them, I have come to accept the painful reality that they had never really been my true friends afterall. My doc agrees. Sound familiar to anyone??? Comments, please : )

February 8, 2012 at 11:59 am
(19) ANGELA says:

Until this very minute 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, 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. Multi-tasking is not an option for me any longer. My official dx was June 2010 after 2nd case of ON, 1st Optic Neuritis was June 2008.

February 8, 2012 at 7:23 pm
(20) Colleen in TX says:

This is very interesting to 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. If I don’t call, they don’t call?

Additionally, I always THOUGHT I was a good reader of people. Yet I have been amazed when people I thought I was close to “turn on me” or are so quick to think poorly of me.

Hmmmm, hmmmm and hmmmmj.

February 8, 2012 at 7:30 pm
(21) Colleen in TX says:

OT, but can you post something about Gilyena (Fingolimid)? The new oral pill. I’m scheduled to go on it next week.

I have to have an ekg test before I take THE FIRST PILL, and then have to wait in the OP wing for 6 hours getting my vitals monitored, followed by an ekg @ the end. Heart rate drop problems?

I’ve been on avonex since my dx 4 years ago. I haven’t had a relapse but MRI shows “silent lesions.” Ahhhh, the things Drs. just don’t tell you! And they think I am building up antibodies to interferon. Hence the oral pill.

ALSO anyone else taking ampiya? Dr. suggested it to see if it would help with my heavy left leg. But the pill comes in @ $1500 so I’m gonna skip that!

February 9, 2012 at 3:05 am
(22) murphy says:

My scariest moments were when I walked into my kitchen to get flatware out of the drawer it had been in for 15 years and could not remember which drawer it was kept in. My second most scarey was not knowing which side cold or hot water faucetts were on. I find I have dyslexic like symptoms with my MS, reversing things between my mind and reality.
Anybody else?

February 9, 2012 at 12:18 pm
(23) Taylor Its says:

Yes, you are not alone with this. I have looked for the same item several times, only to find it ‘right there in in front of me’ in the first place I looked.

I have noticed at time when I go to the mall, I feel slightly overwhelmed by all the people, the displays, and the noise. It is though there is too much for me to take in and yet it is hard to focus on just one or two things. I usually end up finding a place to sit and wait for my wife to finish shopping.

And, thank goodness for spellcheck…

February 9, 2012 at 1:12 pm
(24) Angela says:

I couldn’t agree with you more about the confusion. I have came up on a red or green light and can not for the life of me remember what to do……go or not to go. So I always just stop, check both ways and ignore the honking behind me.

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