Cognitive changes can affect people with multiple sclerosis in many ways, including social functions such as conversation. If someone with MS develops problems with social cognition, they may find it harder to understand social cues or other people’s emotions, which can lead to awkward or uncomfortable social interactions.
MyMSTeam members frequently discuss cognitive dysfunction, which affects as many as 65 percent of people with MS worldwide and causes problems socially. “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.”
In MS, an autoimmune disease of the central nervous system, the immune system attacks nerve fibers in the brain and spinal cord, causing demyelination. Apart from cognitive issues, symptoms of MS include motor problems, muscle weakness, neuropathic pain, vision changes, and fatigue. People with relapsing-remitting MS experience flares of new or worsening symptoms, whereas symptoms for those with progressive MS may worsen gradually over time without flares.
Cognitive impairment in people with MS includes problems with functions such as memory, processing of information, attention, and executive function — higher level problem-solving, self-control, and decision-making. Some strategies address improving cognitive abilities such as memory and problem-solving. But relatively few studies have focused on MS and social cognition, which is the ability to perceive, process, interpret, and respond to social interactions. Social cognition is important for social functioning in daily life and overall quality of life.
The complex set of mental functions involved in social cognition includes theory of mind, emotion perception, and impairments that may be related to other MS symptoms.
The term “theory of mind” refers to mental functions that, during social interactions, help us understand that other people have their own beliefs, intentions, and desires. Compared with those who don’t have MS, people with the condition have higher rates 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. Theory of mind involves self-awareness and the ability to interpret other people’s mental states.
Self-awareness regarding cognitive impairments is a challenging aspect of theory of mind and other cognition problems. 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.”
Another member shared their experience: “I’m happy to be in a new relationship. He does struggle with my cognitive problems. He has to explain and repeat himself. I know it can be frustrating — for me too! I’m probably the one who gets aggravated.”
Emotion perception is related to theory of mind functions. An impaired ability to perceive other people’s emotions also occurs in people with MS at higher rates than in the general public. People with reduced emotion perception may have trouble recognizing emotions in social settings through facial expressions (also called facial emotion recognition) and others’ voices.
Results of a study suggest that people with MS who experience impaired emotion perception have reduced social function and report less social support from friends compared with those who don’t have MS. Without social support, there’s the risk of becoming socially isolated.
“I don't socialize much. It’s like people see MS in me. But I try not to get worked up about anything anymore,” one MyMSTeam member wrote of feelings of disconnection.
Research shows that slowed information processing, a cognitive impairment, in MS is associated with weaker social support and may hinder social interaction. Some research has indicated that fatigue in MS may be linked to impaired social function. Fatigue is associated with brain fog in MS.
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.”
Another member said, “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. 🤐”
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 could benefit from cognitive rehabilitation.
Medications that treat cognitive impairment in other neurodegenerative diseases have not worked for MS, but techniques such as social cognition training may help manage symptoms. In ex-combatants and others who have trouble with social interactions because of 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.
Although little research has been conducted on the effects of social cognition training specifically for MS, a recent study revealed that theory of mind training with literature and film can be effective in people with MS. The results showed that media tools could help people 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 was linked with 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.
On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, more than 187,000 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.