But You Seem Fine: The Unexpected Journey of Living with an Invisible Disability

What does living with a disability look like?

I would describe myself as an educated, well spoken, highly driven overachiever. In university, I was in the honours program, involved with student governance, and a leader of extracurricular initiatives within my department.

I also have a permanent disability.

For years, I struggled with my own perception of my diagnosis. I saw myself as being worth less than others, fundamentally incapable of the same achievements that someone without my challenges might face.

In a way, this distorted self-perception has been an asset to me; it's urged me to work harder at every turn, to prove to myself that if I must be defined by my condition, then it's a definition that I will write.

Living with a permanent disability (in my case, an invisible one) can be a tremendous obstacle, but it can also be an opportunity. Coming from a family that has a history of mental illness, I grew up in a home that was supportive, understanding, and placed a strong emphasis on open, honest communication.

I was incredibly fortunate to be in this environment, and I've been equally lucky in my network of friends and mentors, who have been a constant source of inspiration and encouragement.

Communicating openly with them and being truly heard in return has helped me to redefine my own preconceptions of what it means to have a disability, and those relationships have been deepened in turn through my being able to discuss and share my challenges.

“But you seem fine!”

Uh, thanks. You too.

The perception of what a disability looks like, particularly an invisible one, is outmoded at best and harmful at worst, especially given that the definition of ostensible normalcy is completely arbitrary.

Further, relying on terminology like “disabled” and “mental illness” is problematic and reductive, in that it seeks to categorize something that is by its very nature diverse, subjective, and deeply personal.

Disclosing one’s disability can be daunting, but it's not, as some may erroneously assume, an issue of shame. Rather, it's that we have absolutely no idea how to talk about what it really means to have a disability.

The people whom I have confided in have been largely empathetic and well intentioned, but their words are often clumsy, their approach overly cautious. To me, the underlying issue seems clear: in general, people want to understand, to help, but lack the vocabulary.

It's silence that causes the stigma, and we need to find the words to start having the conversation.

None of this is to say that my relationship with my disability has been easy. It's been a struggle, often just to get through simple daily tasks that others take for granted. I work twice as hard for every victory, and it does take a toll both mentally and physically.

Finding balance is an ongoing challenge, but it's one that's made easier by communicating with the people around me.

When my boundaries are respected, I am not disabled.

A disability is not a statement on an individual’s character or worth, any more than allergies or any other chronic condition is. It's a set of circumstances that impacts or alters the way someone interacts with the world.

I'm not damaged or diminished, but neither can I simply "get over" the need to maintain certain boundaries that are central to my well-being.

My life sometimes involves more layers of complication than others might be accustomed to, but without those challenges, I would not have developed greater resilience and a deeper sense of understanding and compassion.

If you can imagine a disability as an opportunity to connect with something you might not have otherwise experienced or been aware of, it ceases to become a disability, and instead becomes a transformative journey.

This is what living with a disability looks like for me, but others may have a different experience. I urge you to be open and respectful; listen to the people who live with disabilities and learn how they view themselves. Their stories might surprise you.

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