Why We Can’t Say What Multiple Sclerosis Looks Like

What vision comes to mind when you hear the words “multiple sclerosis?” You’ve probably read about people with MS who climb mountains and run marathons. You’ve likely seen people with MS who use a wheelchair because they can’t walk. Both are accurate portrayals of life with MS, but neither represents a complete picture. That’s because MS affects the central nervous system, so it can cause a wide variety of symptoms. Lots of them. Fortunately, not every person with MS has every symptom.

There are also several types of MS. People with progressive forms experience a clear progression of disease activity over time. The rate of progression is different for everybody. People like me, who have relapsing/remitting MS, have clearly defined attacks followed by periods of remission. Remissions can last a few days or many years.

What all this means is that knowing someone has MS tells you little about their condition. The mountain climber with MS may reach the summit one week and be pulling out her disability parking permit the next because she can only walk a short distance before her legs stop working. She’s no faker. Symptoms come and go in fairly unpredictable fashion. That can be frustrating for the people who have it and cause confusion for people who don’t understand it. A person with MS who appears to be the very picture of health may be struggling with a multitude of invisible symptoms. Then again, he may be feeling as good as he looks. Today, at least.

So, what does MS look like? I can’t tell you what it looks like. I can tell you what MS feels like to me, but not how it feels to anyone else, although we might have a lot of similar experiences. The bottom line is that my MS is not your MS or her MS or his MS.

I was recently named as an Multiple Sclerosis Foundation (MSF) Ambassador for the Virginia region. That means I’ll be helping out by participating in public outreach. It’s not my place to recommend treatments or tell anybody what to do. My mission is to help people with MS find the support, services, and information they need to make good decisions, and to help others in the community gain some insight into MS. The Multiple Sclerosis Foundation is a service-based, non-profit organization providing a comprehensive approach to helping people with MS maintain their health and well-being, and I’m thrilled to be on their team.

I’ve had MS for more than a decade and those years have been filled with ups and downs. Lately, it’s been more ups than downs, and for that I’m grateful. I believe in giving back when you can. Right now I can, so I’m happy to lend my time and support to people who want it. It’s a good feeling.

Related Reading
A Typical Life with MS
Video: Invisible Symptoms of MS
Are You at Risk for MS?
Feeling Good: Isn’t That the Crux of it All?
Book: No More Secs! Living, Laughing & Loving Despite Multiple Sclerosis

Main post photo: Digital Vision | Thinkstock

76 comments

S F.
S F.17 days ago

I was recently diagnosed with MS after TWELVE years - yes 12 friggin years - of not knowing what was wrong with me. I also work as a model and have been lucky to travel all around the world. If I hear "But you don't look sick?!?" or "But you look so good!" one more time... You cannot tell what an MS patient is going through from the outside. Thanks for this article!

Nina S.
Nina S.24 days ago

tyfs

Elena T.
Elena Poensgen1 years ago

Thank you :)

Anne F.
Anne F.1 years ago

good point - thanks for posting

Val M.
Val M.1 years ago

Thanks!

Janis K.
Janis K.1 years ago

Thanks for sharing.

Carole R.
Carole R.1 years ago

Thank you for the post.

Joellyn Yoder
Joellyn Yoder1 years ago

Thank you for your article, I am 32 years old and was diagnosed with MS 5 years ago. I look healthy, and for the most part I feel healthy, but I have some horrible days too. I find most people are well intended, they are just misinformed about the symptoms of MS. I choose to not bring the fact that I have MS up in conversation unless it is appropriate. I know so many people who let an illness define who they are, and I refuse to do that. Thanks again for a realistic look at MS.

Sandra Penna
Sandra Penna1 years ago

thank you.

Rosa Caldwell
Rosa Caldwell1 years ago

MS knows no boundaries, sadly it crosses all of them.