Living with multiple sclerosis (MS) often means navigating a reality where the biggest challenges are the ones no one else can see. MS is an invisible illness. It affects the central nervous system (brain, spinal cord, and optic nerves) in unpredictable ways, but it doesn’t always show outward symptoms. That invisibility can make it hard for others to grasp how serious or life-changing MS can be.

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In an ongoing conversation on MyMSTeam about explaining invisible illnesses to others, people with multiple sclerosis left more than 280 comments. Here are some of their best tips for helping friends and family better understand what it’s like.

1. Start With the Science, Then Get Personal

Helping others understand MS often starts with education. MyMSTeam members recommend explaining the disease from the inside out, starting with what MS physically does to the nervous system. You could explain that MS is an autoimmune condition in which the immune system mistakenly attacks the protective covering of nerves. Then you can personalize the science by sharing your lived experience.

One member explained their approach this way: “I would explain after stating its proper name, multiple sclerosis, describe … what it does inside the body… then state the side effects of it physically and emotionally.”

Another member recommended pointing the person to expert video sources, such as the YouTube channel of Dr. Aaron Boster, a board-certified neurologist and founder of The Boster Center for Multiple Sclerosis.

2. Use Analogies or Metaphors To Make the Invisible Visible

Medical jargon can fall flat. That’s why many members say it helps to lean on analogies, metaphors, or even a bit of humor, as tools to translate MS into something people can picture or feel. These comparisons can explain both the physical realities of nerve damage and the unpredictable nature of symptoms, while also helping you feel more seen.

One member shared advice from their doctor that finally helped loved ones understand limits around energy: “As my MS doctor explained it to me: A normal person runs on 30 batteries a day. A person with MS has seven.”

Another used a simple, tech-based metaphor to describe what’s happening inside the body: “I start by discussing wires. When there is a part where the rubber has worn out, it means the current doesn’t flow smoothly. That’s what MS does to my nerves.”

Some members turn to imagery that captures how MS can change from day to day, even when nothing looks different on the outside: “You can’t see the wind, but you know it’s there. Today may be a light breeze, tomorrow could be a tornado.”

3. Explain That Symptoms Can Be Contradictory

MS symptoms often don’t follow a neat or logical pattern, something that can be confusing or even hard to believe for others. Members say it helps to describe this unpredictability and paradox directly.

“On the outside, I may look fine. On the inside, my body is fighting battles you can’t see,” one member shared.

Another tackled one of the most difficult contradictions: “Here’s the hardest part to explain: I can be numb and in pain at the same time.”

4. Let Real-Life Moments Do the Talking

For some members, the most effective explanations came not through long discussions but in everyday moments when symptoms surfaced. Those instances can be teachable, if you’re up for it.

One member described their strategy: “I just wait until a symptom comes up. I get electric shocks. … I just tell them it was a bad one.”

Another explained how their mobility gave others visual clues and a way in: “My family and friends have been advised I have MS due to my troubles on walks. They’ve come to understand that when I wobble, it’s the MS.”

5. Know That Understanding Takes Time

Even the most well-intentioned loved ones may not understand right away — and that’s OK. For some members, what matters most is being honest and taking care of yourself in the meantime.

One member spoke to the ongoing nature of the challenge: “People don’t really get it. It’s all stuff we have to keep on wading through.”

Another offered simple but powerful advice: “Tell them what you know. Honesty is the best way to go, always.”

6. Acknowledge Their Limits — and Yours

Not everyone is open to learning, and that’s not your responsibility. Several members shared that setting emotional boundaries is just as important as educating others.

One member shared their hard-earned wisdom: “You can’t force someone to change how they think. I do not try.”

Join the Conversation

On MyMSTeam, people share their experiences with MS, get advice, and find support from others who understand.

What’s the most helpful way you’ve found to explain MS to someone else? Let others know in the comments below.