Empathy can be described as “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another.” While sympathy means having a genuine concern for others, empathy goes deeper. Empathy is the ability to put yourself in someone else’s shoes and feel what they’re feeling.

Research has raised questions about whether multiple sclerosis (MS) changes people’s empathy levels. However, results showing reduced empathy with MS are not proven in all studies and certainly don’t apply to everyone. In people with MS, the level of empathy can vary widely due to factors like personality differences. This means some people may show more empathy than others.

Everyone has different levels of empathy. Empathy may be determined by your natural-born personality, your emotional awareness, how you were raised, and your capacity for connection based on current and past life circumstances.

If you find yourself with less mental and emotional space for others, you’re not alone. The physical changes of MS, along with the social impacts, can change how you view and interact with the people around you.

Here’s how MyMSTeam members have described their experiences and what the research says about MS and empathy.

Impact of Fatigue and Other MS Symptoms

The physical effects of MS, like fatigue, can leave you with less energy and motivation to express empathy with others. Fatigue can make it harder to actively listen to others for long periods of time. In addition, there’s evidence that higher levels of MS-related fatigue are associated with lower levels of empathy.

If you cut a conversation short because you need to rest, others may mistake this as a lack of empathy. “I feel so guilty for frequently mentally ‘checking out’ with my family,” said a MyMSTeam member. Communicating and educating your loved ones about why you can’t always be as emotionally available when you’re tired can help.

“I feel so guilty for frequently mentally ‘checking out’ with my family.”
— A MyMSTeam member

MS also affects cognitive functions. Brain lesions from MS may lead to executive-functioning changes that affect how you think and process information. Research suggests that around half of people with MS experience cognitive impairments. People with MS may also have reduced social understanding, which is separate from any other cognitive difficulties they might experience. Doctors think that brain dysfunction could affect aspects of empathy, such as the ability to understand another person’s emotions. While research shows that people with MS may struggle to interpret other people’s facial expressions, this doesn’t necessarily translate to social problems like a lack of empathy.

Mental and Emotional Changes From MS

MyMSTeam members have said they struggle with sensory overload and depression that make it more difficult to be open and present with loved ones.

“Sensory overload is a huge problem I have, and it leads to feeling extremely overwhelmed and agitated,” described one member. “Sometimes when this happens, I get angry and snap over simple things. In addition, I have a hard time focusing and a poor attention span. Friends tell me sometimes it seems like I’m daydreaming, and I just stare into space. … I have become depressed and extremely moody.”

Other members have trouble opening up and being vulnerable. “Emotional issues sometimes make it hard to communicate with people — among other things, about the emotional issues, which is a catch-22,” explained one member.

Another wrote, “Very rarely do I confide in people about personal matters … be it health or marriage or anything sensitive. I come from quite a stoic family, and it just isn’t done. I’ve also narrowed down my pool of friends to what I can now count on one hand.”

It shouldn’t come as a surprise that a major life change, like an MS diagnosis, affects your social life and well-being. Sometimes issues like being easily distracted or emotionally “closed” are heightened by the added stress of MS. In addition, depression and anxiety are common in MS and may cause a disconnection from others.

Feeling Misunderstood by Loved Ones

These problems can go both ways. Many MyMSTeam members feel a lack of empathy from their loved ones. Insensitive remarks put them on the defensive. As a result, they’re reluctant to share and connect with others.

“My family tries to be supportive,” said one member. “They have noticed the changes, and when I apologize after getting angry, they say, ‘It’s OK, I know it’s because of your MS.’ But sometimes I can't help but think they don’t truly understand even though they try to. I do often feel alone. So in response to the people who tell me, ‘You are lucky,’ I say no, I am not lucky. I have MS. I have many more symptoms that I struggle with on a daily basis than you can see.”

“My family tries to be supportive. But sometimes I can’t help but think they don’t truly understand, even though they try to. I do often feel alone.”
— A MyMSTeam member

Another member wrote, “While my husband and kids are wonderfully supportive, my immediate family continue to deny and ignore my ‘situation.’ Having your sister continually refer to being on long-term disability as being retired and ‘able to do whatever I want’ is not only frustrating, but it hurts.”

Other members have said the physical changes of MS affect their self-esteem and lead to isolation.

“I don’t like myself, although I know it’s only the MS. For years, when I was not able to walk, I didn't want to associate with anyone. There was little understanding of what I was going through from my wife and children, who went on living their lives and having friends. I did not want friends. I wanted nobody,” explained one member.

Hearing the experiences of others helps by letting you know you’re not alone. Although these negative feelings are normal, they can also be temporary and change over time.

Getting Help for Mood Changes

MyMSTeam members have detailed their hard times and shared how they found a positive path forward.

“This time last year, I had a double relapse and was off work for over four months,” said one member. “My specialist recommended for me to see a psychologist. It was life-changing. I had 10 hour-long sessions with a professional who understood MS medically and emotionally. We talked about the grieving process, how my body was changing, and that I didn’t feel feminine anymore. I couldn’t talk about how I really felt with loved ones because I could see the sadness in their eyes. We talked about how sad I felt because I couldn’t run and walk anymore. We talked about mindfulness and acceptance, and strategies for coping if I felt down.”

“My specialist recommended for me to see a psychologist. It was life-changing.”
— A MyMSTeam member

Other members have discovered how to adjust their mindset regarding stress and relationships.

“Learning to let go of things that are out of our control has helped me tremendously,” said one member. “Once I did this, other stresses became more apparent. I’ve been eliminating those sources of stress (and those people, too) from my life. It has given me such a greater quality of life and, I believe, helped me manage my MS more, too.”

Another described how they found a new sense of hope and peace. “My life has improved in a lot of ways, has changed in other ways, for the best. I’ve had to remove myself from very unhealthy relationships and distance myself from people I love because they didn’t understand what my life is like on a daily basis. I don’t push myself on anyone and don’t expect anyone to be in my life if they don’t want to be.”

If you’re feeling stuck in a negative place, a licensed mental health professional can help you adjust your thinking and manage your expectations of others to help reduce feelings of disappointment and anger. Family counseling is also a good option to improve communication and understanding.

Finding Support and Compassion on MyMSTeam

Research tells one side of the story, but real people with MS tell another. Empathy is easy to find on MyMSTeam where members offer valuable insights on living well with MS.

“You have to remember, it’s still the lovely you inside your body even though your body is slow,” said one member. “Keep your sense of humor, talk openly to your friends when you need to, and have a good laugh and cry. We only have one chance at happiness and loving our families, friends, and experiences.”

Feeling misunderstood by family and friends is a common experience for members of MyMSTeam. But tapping into your emotions and practicing empathy with others (who simply may not understand or have the capacity to accept your disease) can help you from feeling alone. You deserve empathy from others, too. Seek support from your team, your primary care doctor, and communities of people with MS who get what you’re going through.

Talk With Others Who Understand

MyMSTeam is the social network for people with multiple sclerosis and their family members. On MyMSTeam, more than 214,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Do you find it harder to be empathetic since being diagnosed with MS? Have you been able to find empathy from others for your experiences with MS? Share your story in a comment below or on MyMSTeam.