When you think of a person living with multiple sclerosis (MS), do you picture a person in a wheelchair? Many people do, but the truth is, that’s not the case for everyone living with the disease. MS disability is widely misunderstood. Sometimes the effects of MS are visible, such as having trouble walking or hand tremors. Other times they are not as obvious. Invisible symptoms of MS – fatigue, pain, blurred vision, numbness, and brain fog – which often go unnoticed by other people, can also interfere with daily functioning and be just as debilitating.

We recently spoke with Brittany and Marti, people living with multiple sclerosis, about their journeys to understand how the invisible symptoms of the condition impact their daily lives and mental wellbeing. They describe their first experiences with the disease and how they manage life and educate others about the condition.

Living With Multiple Sclerosis

BRITTANY, AGE 34

“There are dozens of misconceptions about what it’s like to live with MS. People with MS will wind up in a wheelchair. MS is only for old people. If you’re not experiencing MS symptoms every day, you don’t need treatment. MS is genetic. MS isn’t genetic. There is a lot of room for questions and clarification. I think the greatest misunderstanding of the disease stems from the fact that most of what we experience is invisible.”

Brittany, self-described online as “A Hot MS,” was diagnosed with MS in September 2019 at the age of 30, after falling down the stairs in her home. She has since been diagnosed with multiple autoimmune conditions in addition to MS, including: plaque psoriasis, IBS-C, and fibromyalgia.

A singer, writer, speaker, artist, disability advocate, model, and content creator for the MS and chronic illness community, Brittany thinks education on all of the possible symptoms of MS (hidden and visible) is the only way to help others understand the impact of the disease. She gained a sense of purpose with her MS diagnosis – to motivate, empower, and strengthen others who face MS and chronic illness.

MARTI, AGE 39

For Marti, the entry into the world of MS was abrupt. While on a family vacation in 2018, she woke up and wasn’t able to move the left side of her body. She recovered but was diagnosed with relapsing-remitting MS. Since then, Marti has experienced a rollercoaster of denial and grief as she manages her MS symptoms, including tremors, difficulty walking and others that are harder to spot like fatigue and chronic pain. She says her body seems to have a mind of its own, and she sometimes lacks control over her mind, limbs, vision, and even her bladder. Her MS symptoms continue to shift. When she experienced temporary numbness in her body another time, she feared the “inevitable” was happening until her leg started to tingle. Though uncomfortable, she was grateful to feel something again.

Despite the challenges that have come her way, Marti is determined to shed light and be a resource for others in the MS community who may be experiencing similar struggles. A thriving Los Angeles-based filmmaker and CEO, Marti documents her experiences as a Black woman who manages multiple chronic illnesses, dating, and fertility.

It’s important for people living with MS to tell their care team about all of the ways the condition is impacting their lives – physically, mentally, and emotionally. Getting started with early treatment of a high-efficacy disease modifying therapy (DMT) may help slow the progression of disability - helping people preserve their physical and mental abilities and maintain independence as long as possible.

For resources related to mental health, be sure to check out the helpful resources from our advocacy partners: Can Do MS, First Descents, MS Association of America, MS Focus, National MS Society and United Spinal Association. And of course, you should always consult your doctor for any questions you have about your medical conditions.