Cognitive changes can affect people with multiple sclerosis (MS) in many ways and may have an impact on social interactions such as conversation. Cognitive symptoms affect as many as 65 percent of people with MS worldwide and may make social cognition and social functioning challenging. If someone has trouble with social cognition, it may be harder to understand social cues or other people’s emotions, which can make socializing awkward or uncomfortable.
MyMSTeam members frequently discuss difficulties with socializing. “I’m not able to get through a conversation without getting stuck on words,” wrote one member. “I’ve pretty much lost track of my friends. They seem to feel awkward around me.”
Another member said, “I don’t socialize much. It’s like people see MS in me.”
Read more about how MS can cause social issues and, more importantly, tips for overcoming these problems.
Cognitive symptoms of MS may include problems with memory, processing of information, attention, executive function (higher level problem-solving), self-control, and decision-making — all of which can affect social interactions.
Social cognition is the ability to perceive, process, interpret, and respond to social interactions. Social cognition is important for effective social functioning in daily life and overall quality of life.
The term “theory of mind” refers to cognitive functions and self-awareness during social interactions that help us understand that other people have their own beliefs, intentions, and desires. People with MS have a higher risk of impaired theory-of-mind functions, which may be due to changes in white matter in the brain, cortical atrophy, and brain lesions associated with MS.
People with MS can also have trouble with emotion perception, which is related to the theory-of-mind functions. In social settings, these individuals may have trouble recognizing emotions through facial expressions (also called facial emotion recognition) and tone of voice. Neurology research has suggested that people with MS who experience impaired emotion perception are likely to have reduced social function and have reported less social support from friends compared to people without MS.
One MyMSTeam member wrote about having trouble understanding the tenor of a conversation. “Having conversations was hard! I hate not being able to have a good conversation. I just either talked too quiet or too loud! So I just stayed quiet. 🤐”
Although research on MS and social functioning has been limited, here are some tips that may help make socializing easier.
Social connections are essential for your well-being, and research has shown that social support can help relieve depression and anxiety in people with MS. There’s no doubt that MS can have an impact on relationships with family and friends, but it can also be an opportunity to openly share the experience of having MS and better understand how it affects your family members and close friends.
Communicating openly with the people in your life can help you maintain the social support you need from loved ones. Sometimes, people may pull away because they don’t understand your condition and may feel uncomfortable asking about your MS. You may need to explain how it feels to have MS and what you need from other people. Let those close to you know that you need social support. Developing trusting and communicative relationships is an important step in maintaining a supportive community of people in your life.
You can also let others know that sometimes, you may need extra explanations and patience to understand conversations. One MyMSTeam member explained their situation: “I’m happy to be in a new relationship. He does struggle with my cognitive problems and has to explain and repeat himself. I know it can be frustrating — for me, too! I’m probably the one who gets aggravated.”
Some members of MyMSTeam have asked their loved ones to read or watch content that can explain what social difficulties with MS are like. One member recommended the book “Awkward Bitch: My Life With MS” by Marlo Donato Parmelee. “It’s a humorous and honest account of her MS diagnosis,” the member explained. “I’ve actually asked friends and family to read it so they can understand better what I’ve gone through. Check it out!”
Some research has indicated that fatigue in MS may be linked to impaired social function, particularly information processing. Fatigue can make physical symptoms worse, but it is also associated with brain fog in MS and can make it difficult to stay focused on a conversation or follow a train of thought.
One member wrote, “The cognitive symptoms and fatigue can be bad sometimes, and it’s hard to keep up a conversation without looking stupid. And people really don’t understand. I liked COVID quarantine because I didn’t have to socialize, LOL.”
If there’s a time of day you generally have more energy, try to time social functions around that window. But you may need to tell friends or family members that fatigue can sometimes make socializing difficult for you. Let friends know ahead of time that MS symptoms can be unpredictable, and it’s possible that fatigue may make it necessary for you to postpone a social get-together. When making social plans, try to schedule them for when you tend to have the most mental energy.
If you feel you may have problems with social functioning, it’s important to discuss cognitive function with your neurologist. You and your neurologist may determine that you should have cognition testing or maybe you might benefit from cognitive rehabilitation.
One MyMSTeam member described their surprise at learning they had cognitive deficits. “Had my cognitive testing today. I wanted the testing to show the problems I am having, but it was really embarrassing and overwhelming. I found that I have more symptoms cognitively than I thought. It was just a very rough day.”
It can be difficult to discover you have cognitive impairment that may be affecting your social cognition, but it’s a step in the right direction for getting help.
Medications that treat cognitive impairment in other neurodegenerative diseases have not worked for MS. However, there are cognitive rehabilitation strategies, including cognitive behavior therapy, that are used to help people with MS improve cognitive abilities such as memory and problem-solving.
Social cognition training, in particular, for people with MS has not been widely studied. However, in ex-combatants and others who have trouble with social interactions due to post-traumatic stress disorder, social cognition training has led to better social functioning. Among healthy individuals, this type of training has proved effective across age groups, including older people who tend to experience cognitive decline.
One recent study revealed that theory-of-mind training with literature and film can help people with MS better recognize emotions and mental states in others, boosting social functioning. Another study on social cognition training and MS involved physical exercise, health education, and behavior training that focused on goals and expectations. The training showed some improvement in cognitive performance, depression, and anxiety.
Other findings point to mindfulness as a basis for social cognition training for people with schizophrenia, and this may be promising for people with MS as well. Mindfulness training, which aims at improving attention and awareness of what is happening in the present moment, has been used to reduce stress, anxiety, and depression. Research shows that mindfulness training can improve cognitive symptoms such as information processing speed and memory in people with MS.
“Mindfulness and being very aware of what’s happening around you keeps you present and helps to keep unnecessary stress from your mind,” a MyMSTeam member wrote.
Mindfulness training has also been shown to improve fatigue and depression in people with MS. If you are interested in trying mindfulness training, talk to your health care providers.
An in-person or online support group like MyMSTeam can provide a positive supportive environment for talking about social challenges that can occur for people with MS. Hearing from others with similar experiences can help relieve feelings of isolation that can develop if social interactions are difficult.
Studies have shown that support groups can help improve emotional well-being, mental health, a sense of connection, and a better understanding of living with MS. Support groups can offer helpful resources for coping with social problems, as participants learn what strategies have worked for others with similar social functioning challenges.
If you are feeling isolated, talk to your health care team about resources that can help you understand social difficulties that may occur with MS and how you can get help. Health care professionals and clinicians are recognizing more and more the importance of addressing social cognition and social functioning in people with MS.
On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, more than 195,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Have you noticed cognitive issues in MS affecting your social interactions? Have you taken any steps to improve your social cognition? Share your experiences in the comments below, or start a conversation by posting on your Activities page.