Apple Podcasts | Spotify 

What does it feel like to have Multiple Sclerosis?

Ask ten different people with MS and you’ll get ten different answers.

Ask one person with MS on ten different days and you’ll still get ten different answers.

It’s not about being indecisive or exaggerating symptoms. MS is unpredictable and often impossible to describe.

When this becomes your daily reality, it’s hard for even your closest friends and family to fully understand. On the outside, you may look completely fine. But inside, your body is fighting a battle most people can’t see.

If you’re supporting someone with MS, you might wonder how someone who looks healthy can be so exhausted or in pain. And if you’re living with MS, you might struggle to find the words to explain what you’re going through.

That’s exactly what this blog post is for. It’s a guide to help describe some of the most common symptoms of MS so that those living with the condition can feel seen and heard, and those supporting them can better understand what it’s really like.

Understanding MS: The Basics

Multiple Sclerosis is an autoimmune disease where the immune system attacks the central nervous system—the brain and spinal cord. The result is damage to the protective coating of nerve fibers, known as myelin.

Imagine your phone charger. The outer white coating protects the wires inside. When that coating frays, your phone might not charge properly. Sometimes it works fine, sometimes it doesn’t, and sometimes you have to bend the cord at just the right angle to get a connection.

This is a simple way to understand how MS affects the body. When myelin is damaged, the brain’s messages to the body are delayed or lost. Even simple tasks like walking or holding a cup can become exhausting because the body has to work harder to process those signals.

MS Fatigue: More Than Just Tired

Fatigue is one of the most common and misunderstood symptoms of MS.

It’s not just feeling sleepy. It’s a deep, physical exhaustion that doesn’t go away with rest. One day you might feel almost normal. The next, it feels like your body ran a marathon in your sleep.

This kind of fatigue makes everyday tasks feel overwhelming. Taking a shower, preparing a meal, or walking across the room can feel impossible. And the worst part? There’s often no clear reason or warning.

That’s where the Spoon Theory comes in. Created by Christine Miserandino, it uses spoons as a metaphor for energy. Each daily task takes a spoon. For people with chronic illness, those spoons are limited. Once they’re gone, they’re gone. You can’t borrow from tomorrow.

For people with MS, planning each day means deciding what is worth using energy on and what isn’t. Even enjoyable things like socializing or exercise can come at a cost.

Brain Fog: A Mental Haze

Everyone forgets things now and then. But brain fog in MS is something else entirely.

It’s not just distraction. It’s a cognitive slowdown that makes it hard to think clearly, find words, or focus.

Think of driving through thick fog. You know the road. You’ve driven it before. But now every turn feels uncertain. You slow down. You strain to see. Everything that was once automatic now takes full effort.

That’s what brain fog feels like. Your brain is trying to move through the fog, and simple thoughts or tasks become confusing and slow.

The reason behind this? Just like the body, the brain’s messages are slowed or disrupted by MS. Damaged myelin makes it harder for your brain to communicate clearly, resulting in a sense of mental fatigue, confusion, and frustration.

Heat Intolerance: A Hidden Trigger

One of the most mysterious MS symptoms is heat intolerance.

Years ago, doctors would diagnose MS by putting someone in a hot tub. If symptoms flared, that was considered a sign of MS. While we’ve come a long way since then, the principle still holds. Heat affects many people with MS in powerful and unpredictable ways.

And it doesn’t have to be extreme. Sometimes it’s a subtle shift in room temperature or even internal body heat from cooking or exercise. A single degree can trigger fatigue, numbness, vision problems, or weakness depending on how MS affects you.

Why does this happen? Even small increases in temperature can further slow nerve signal transmission in a nervous system already compromised by MS.

The good news is these symptoms usually ease once the body cools down. And many people see improvement in heat sensitivity over time.

No Two MS Experiences Are the Same

One of the hardest things about MS is how different it can look from person to person.

Some people have visible symptoms like walking difficulties or tremors. Others struggle with invisible symptoms like fatigue or brain fog. No two people will experience it exactly the same way.

But all of us benefit from understanding the common threads and giving ourselves and others the language to describe it.

Moving Forward with Compassion

MS doesn’t just impact the body. It affects every part of a person’s life—from relationships to work to daily routines. And that impact can change from day to day, or even hour to hour.

For those living with MS, having the language to describe your experience is powerful. For those supporting someone with MS, hearing these descriptions can help you understand and connect in more meaningful ways.

This isn’t about seeking pity or special treatment. It’s about building awareness and creating a space where people with MS can feel seen, supported, and empowered to live their fullest life.

Want More Encouragement Like This? Tune into this week’s special episode of My MS Podcast:
🎧 What it feels like to have Multiple Sclerosis and

Listen now to My MS Podcast