'You Don't Look Like You Have MS,' and Other Myths We Need to Debunk

For MS Awareness Month, let’s help others forgo their expectations of what someone with multiple sclerosis ‘should’ look like, and educate them about our invisible symptoms.

“I don’t know what you have, but it’s not MS,” a neurologist told me in 2006 after I’d been searching for a diagnosis for months. He’d glanced at my MRI images and observed my appearance in the exam room. I was relieved, but a decade later, a different neurologist said the opposite: “I think what we’re dealing with here is MS.”

That day, after a lumbar puncture revealed oligoclonal bands in my spinal fluid — and 13 years after a few lesions were first noted on my brain MRI — I found out I did indeed have multiple sclerosis (MS).

For over a decade, I’d been repeatedly asked to walk down the hallway as a doctor assessed my gait from behind.

After a short exam, I was told there was nothing neurologically wrong. It seemed that my story of disease progression was less important than my appearance.

I later realized that much of what I’d been told about MS was incorrect. For starters, my life wasn’t even close to over, as I thought it would be when I first heard my diagnosis.

What’s more, I later learned that my appearance might reveal nothing about how I actually feel — in fact, my disability could be invisible to those around me.

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Expectations influence our experiences

One reason my diagnosis was delayed is because many people — even some physicians — have expectations of what MS should look like. But this condition can manifest in many ways. There is no one way to experience MS.

I’ve been told numerous times that I don’t look like someone with MS.

“I’m confused,” my Uber driver said recently on the way home from my appointment. “I drive a man with MS often, and he can barely walk.” Only moments prior, she had seen me walk to the car at a regular speed and a typical gait.

She expected to visually detect my condition — and she’s not alone.

“MS is different for everyone,” I said. “It can attack anywhere in your nervous system, which means the resulting symptoms can have a wide array of implications.”

I then explained that some people have a progressive course while others have a relapsing-remitting form of MS. But even within those groups, symptoms vary and can change over time.

A wide array of symptoms

The list of possible early signs of MS includes:

• vision problems
• tingling and numbness
• pain and spasms
• weakness or fatigue
• balance problems or dizziness
• bladder issues
• difficulties with sexual health
• cognitive problems

Less common symptoms of the condition may include:

• hearing loss
• seizures
• tremors
• breathing problems
• loss of taste

The range of possible implications is wide.

“The natural course of MS is different for each person, which makes it difficult to predict,” the National Institutes of Health states. Symptoms depend on the severity of the inflammatory reaction as well as the location and extent of the lesions.

When my condition first began in 2005, pain and stiffness were my chief complaints, but I was told by more than one neurologist that they weren’t symptoms of MS.

Our understanding of the condition has come a long way, and doctors are now more aware that symptoms can vary widely.

Research confirms invisibility

There is an unseen side of MS, meaning we can experience symptoms that others are unable to see. For me, fatigue and weakness affect my ability to stand and walk, yet there are no visual signs displaying my difficulties.

Other symptoms such as anxiety, bladder and bowel difficulties, cognitive issues, depression, and pain can have a tremendous effect on our lives, yet they often aren’t apparent to others.

One review of research stated, “Invisible symptoms are common among people living with MS and may have a significant effect on their mental health, social roles/interactions, employment, daily living, and quality of life.”

In a very small recent study, people with MS took digital photos when they experienced an invisible symptom. They sent the images to researchers, along with a brief caption of what the photo represented.

Two weeks later, each participant was asked to describe five of the images they had sent.

Most admitted to lacking the language to communicate or explain these symptoms adequately to others, and often relied on sound effects and metaphors in their attempts. This further intensified their sense of invisibility.

Many expressed the difficulty they experienced in confirming the realness of their symptoms — to both themselves and others — without external evidence of them.

Participants also discussed feeling dismissed, misunderstood, and invalidated by others in relation to their invisible symptoms.

Similarly, we may have trouble discussing our invisible symptoms with healthcare professionals if we feel misunderstood.

If more healthcare professionals understood and acknowledged that MS is a condition that can’t be fully seen, perhaps we would feel more comfortable getting help for these symptoms, knowing we would not be met with judgment.

Speaking up about our experiences can create greater awareness of these invisible manifestations of MS — especially during MS Awareness Month.

What I want the world to know

This year, during MS Awareness Month (March), I want the world to know that if 20 people with MS described their symptoms, there would be 20 different stories.

I want to create awareness of the ways we experience symptoms invisibly. My walking pattern appears typical, yet walking is my biggest difficulty in life with MS.

My muscles fatigue with use and become shaky, limiting my ability to walk long distances, but no one can see me having a difficult time with that as I walk short distances.

Every symptom I experience daily is unseen by those around me, which often makes me feel alone. The more we talk about invisible symptoms, the more understood this condition will be.

It’s time to forgo the expectations of what we believe MS should look like. Then, the world will be more aware of MS and how unique our experiences can be.