You Don’t Know Me: How MS Symptoms Impact How You’re Perceived

Many symptoms of MS — fatigue, cog fog, pain — aren't always obvious, so it’s sometimes regarded as an “invisible” disease, leaving people who have MS feeling unheard and unseen.

You Don’t Know Me: How MS Symptoms Impact How You’re Perceived

MS symptoms like fatigue, brain fog, and walking issues can be misinterpreted by others and further complicate what life is like for Black people with MS.
You Don’t Know Me: How MS Symptoms Impact How You’re Perceived

Medically Reviewed

M any hallmark symptoms of multiple sclerosis (MS) — fatigue, cog fog, pain — aren’t always obvious, so it’s sometimes regarded as an “invisible” disease. This can leave people with MS feeling unheard and unseen and create unique issues, from misunderstandings by others about the condition to feeling reluctant to speak up when feeling ill.

For example, even well-meaning friends may not get it when you cancel plans at the last minute because a flare hits out of the blue. Or you may worry that if you ask for accommodations at work, you’ll sound as though you can’t do your job.

Many MS Symptoms Are Invisible to Others

“Some symptoms people commonly associate with MS relate to difficulty walking — an obvious consequence of MS,” says psychologist Kevin Alschuler, PhD, director of rehabilitation research at the Multiple Sclerosis Center at University of Washington Medicine in Seattle. But, in reality, he adds, the vast majority of MS symptoms aren’t so obvious.


Sources: Brain Behavior, and Immunity — Health, Disability and Rehabilitation, Multiple Sclerosis and Related Disorders, Multiple Sclerosis International Foundation, Multiple Sclerosis Society, National Multiple Sclerosis Society, Optometric Education

Self-Image and Public Perception: A Vicious Cycle

Living with any chronic condition can diminish self-esteem and self-image and make it difficult to live life the way you’d like. And feeling awful when you appear to be perfectly well can cause internal turmoil. Combined with people responding with comments like, “But you don’t look sick” when you talk about MS can even cause you to second-guess how much of an impact the disease truly has on your life.

“People make all sorts of assumptions when someone ‘looks fine’ but actually is impacted by their disease,” says Dr. Alschuler. “And most people with MS are motivated to work really hard to keep living a life that looks like the life they had before. So, they push through symptoms, push through fatigue, show up at work, and give it their all, even if it exhausts them … which can further hide those symptoms and make it even harder for others to understand.”

This can lead to all sorts of misconceptions.

Learning to Speak Up and Let Go

Communicating with others about MS can help generate awareness and understanding. It also alerts those around you to ways they can help out when you need it.

“You can’t assume other people know that you have symptoms; you can’t assume that they understand what it’s like to live with those symptoms; and you can’t assume that they know what you need in relation to those symptoms,” says Alschuler. So, you have to speak up.

Preparing for how to handle misconceptions around MS is the first step. “It helps to have different versions of how you describe MS, based on who you’re communicating with,” says Alschuler. “A succinct version for someone you run into but don’t know, as well as a longer version you would share with a friend or family member. … That way, you’re prepared to share what you need to share in different situations.”

It can also help to remind yourself that, at the end of the day, you can’t control what others think about you. Learn to let it go.

It’s really about accepting MS as part of your life, says Alschuler. “If you’re resisting the fact that MS is present, and that you have MS-related needs, it’s hard to make the adjustments that are going to allow you to live the best life that you can.”