Does Having MS Affect How You Define Yourself?

Start by thinking about the words you use to describe yourself. Do you consider yourself to be sick or ill, disabled, impaired, none of these – or something else? At Can Do MS, we use the word disabled to describe the ways in which a person may be limited in their activities by MS symptoms like fatigue, pain, mood or cognitive changes, bladder or bowel symptoms, or walking problems. The word disabled can feel kind of… loaded. For some people, the word may feel empowering because it helps them define what has happened to them and allows them to feel part of the active and vocal disability community. For others, it feels like a label that doesn’t quite fit or maybe doesn’t feel earned yet. But whether or not you see yourself as disabled, or living with a disability, the reality is that MS brings challenges that ripple through many parts of life. And how you choose to talk about that, especially with yourself, is deeply personal.

When thinking about what it means to be disabled, it may help to use the ICF (International Classification of Functioning, Disability, and Health) model that sees the full picture of your ability to function comfortably, safely, and independently in everyday life. With the ICF model, MS isn’t just a disease that lives in your immune system, brain or spinal cord. It’s a disease that can affect how your body functions, how you move, feel, and think, and what you are able to do day to day. In other words, the ICF model looks at the degree to which you are able to, or prevented from, engaging in the activities that give your life meaning.

International Classification of Functioning (ICF) Model

When someone is diagnosed with MS, the focus often stays at the top of this graphic – the diagnosis itself – and on the impairments it causes, like fatigue, pain, or cognitive changes. But what the rest of the graphic highlights is just as important, if not more so: how those impairments impact your daily life and your ability to participate in meaningful roles and activities.

Many factors influence participation, including your openness to doing things differently (like using adaptive tools, strategies, or devices), the environment you live in, your coping skills, and the strength of your support network. Recognizing and addressing these broader impacts is key to living well with MS.

So yes, MS may affect important functions like coordination, vision, energy, and thinking. But living with MS isn’t just about managing medical issues. It’s about finding ways to participate in the activities that are meaningful to you. It’s about navigating your disabilities in ways that allow you the greatest level of activity, independence, and participation

Claiming the Word "Disabled"

Let’s pause there. Claiming the word disabled can feel huge. Maybe it doesn’t sound like you. Maybe it feels heavy or dramatic or “too soon.” That’s okay. You don’t have to adopt the word to use the tools. This is important: You do not need to identify as disabled to use disability resources. Whether it’s handicap parking, accessible restroom stalls, scooters at the grocery store, or applying for workplace accommodations, these are tools designed to keep you engaged in life, safely and confidently. Because that’s the goal, right? Staying involved in the roles, communities, and activities that matter most to you? If a tool helps you keep doing that, it’s not a step backward, it’s a power move – it’s taking control of your life.

A lot of people worry about how others will see them. Will they be judged for using a mobility scooter when they can still walk a little? Will someone assume they’re faking it? These are valid fears, and they’re not uncommon. But here’s a gentle reminder: Most people are way more focused on themselves than on you. Seriously. They’re wondering how they look, how they sound, whether their own day is going okay. If someone does look, they likely forget it five seconds later.

And if they don’t? That’s on them. Not you.

Redefining Disability On Your Terms

The truth is, there’s nothing weak about using what helps you. There’s nothing shameful about choosing safety over struggle, or inclusion over isolation. Most people would rather see you rolling through a grocery store with a smile than pushing through exhaustion and risking a fall.

For some, identifying as disabled is a meaningful, even liberating, part of their story. For others, it’s a term that just doesn’t sit right. Both are valid. What matters is not what you call it, but how you live through it. You deserve safety. You deserve access. You deserve support. You deserve independence. And you don’t have to justify that to anyone.