The Reality of Being Disabled in Your Twenties: "But You Don't Look Disabled"

One of the comments I hear most often as a disabled person in my twenties is, "But you don't look disabled." Most of the time it's not said with any malice. In fact, it's usually meant as a compliment or an attempt to be reassuring. People see a young woman who is happy and on the outside, seemingly well, and they struggle to connect that image with their idea of disability.

The problem is that disability doesn't have a particular look.

Growing up, I think many of us are taught to recognise disability only when it's obvious. We learn to associate it with wheelchairs, white canes, guide dogs, or other visible signs. What we don't learn nearly enough about are the countless conditions that can't be seen at all. Chronic pain, fatigue, neurological conditions, autism, anxiety disorders, seizures, connective tissue disorders, and many other disabilities often exist entirely beneath the surface.

Living with Hypermobile Ehlers-Danlos Syndrome has taught me just how misleading appearances can be. From the outside, people don't see the joints that dislocate, the exhaustion that follows even simple activities, or the pain that accompanies almost every day. They don't see the medical appointments, scans, tests, medications, mobility aids, or the constant calculations that happen in my head before I decide whether I can manage a particular activity. What they see is a person who doesn't match their expectations.

Being disabled in your twenties comes with a unique set of challenges because society often treats youth and disability as though they are opposites. There's an assumption that young people should be healthy, active, independent, and building their future without limitations. When your reality doesn't fit that narrative, people often struggle to understand it. I've lost count of the number of times I've felt the need to explain why I use a wheelchair, why I can't walk very far, or why I have to carefully manage my energy just to make it through the day.

What makes the phrase "You don't look disabled" particularly frustrating is that it can unintentionally feel dismissive. While most people don't mean it that way, it often comes across as though they're questioning your experience because it doesn't fit their expectations. After years of medical appointments, investigations, worsening symptoms, and adapting to a body that doesn't always cooperate, it can be difficult to hear your reality reduced to how you happen to appear at that moment.

One of the strangest assumptions people make about chronic illness is that being sick and being beautiful are somehow mutually exclusive. As though pain, disability, fatigue, seizures, inability to hold my joints together and medical appointments should automatically strip away every other part of who we are. The truth is that disabled and chronically ill people still enjoy looking 'pretty'. We can be struggling behind the scenes while still taking pride in our appearance. Looking well isn't the same as being well, I see alot of women on social media wear makeup and style their hair to give birth. It doesn't make the childbirth any less of a painful and sometimes traumatic experience just because they look 'pretty', and being disabled doesn't mean we stop wanting to feel confident in our own skin. I didn't say I was ugly, I said I was unwell. 

The truth is that many disabled people become incredibly good at hiding their struggles. We smile when we're in pain, attend events despite exhaustion, and push ourselves to participate in life because we don't want our conditions to define us. Ironically, the better we become at coping, the more likely people are to assume we're not struggling at all.

I know that when people say "You don't look disabled" they're often trying to be kind. What they're usually trying to communicate is that I look happy. Those sentiments are genuinely lovely, but there are much better ways to express them. Telling someone they look great today, saying it's nice to see them, or simply asking how they're doing acknowledges them as a person without unintentionally questioning their disability.

One misconception I've encountered since starting to use a wheelchair is the idea that I've somehow "given up" on walking. The reality couldn't be further from the truth. I still walk when I'm able to, but my mobility is limited by a body that simply doesn't cooperate. I cannot walk more than a few metres without significant pain, overwhelming fatigue, breathlessness, or my knees and legs threatening to buckle beneath me. Using a wheelchair hasn't been about giving up on walking, it's been about finding a way to continue experiencing the world when walking alone is no longer enough. My favourite response is usually to ask whether they've given up on walking too as they use a car/bus/bike/plane etc or if they gave up seeing because they wear glasses. Most people quickly realise that using a tool to support your body isn't giving up at all, it's simply adapting to reality when I use those funny comebacks.

One of the biggest lessons I've learned throughout my own journey is that disabled people do not owe the world visible suffering. We don't have to look unwell to be unwell. We don't have to abandon our hobbies, our fashion sense, our makeup, or our personalities to prove that our conditions are real. Disability can exist alongside colourful hair, pretty outfits, laughter, travel, friendships, and joy.

The reality of being disabled in your twenties is that you're often navigating a world that expects disability to look a certain way while trying to build a life that doesn't revolve entirely around your health. It's learning to advocate for yourself when people make assumptions, finding confidence in mobility aids when society tells you they're something to hide, and understanding that your experiences remain valid whether other people can see them or not.

Disability doesn't have a look, and perhaps the sooner we stop expecting it to, the easier it will become for disabled people to exist without constantly feeling the need to justify themselves.

Thank you for reading,
Faeryn

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