Reflecting on My Journey with Invisible Disability
Today is the International Day of People with Disabilities—a day to acknowledge the diversity of experiences within the disability community, to listen, and to learn.
Today, someone told me a story. They spoke of feeling trapped in a body wracked with chronic pain, of being an active person unable to move in ways they once could, of crying out for help and feeling unheard. They assumed I couldn’t relate because I appear able-bodied.
But I can hear them. And I feel their words more deeply than they may ever know.
For the past 23 years, I have lived with Crohn’s disease and psoriatic arthritis—conditions that have shaped my life in profound ways. These invisible illnesses have been physically (and emotionally) crippling at times.
I have experienced the loneliness of living with chronic pain, the frustration of being misunderstood, and the challenge of feeling as if no one can hear you, let alone help.
It’s exhausting and it etches away at your self-worth.
Today, my body feels strong, and for that, I am profoundly grateful. But, this is not my everyday reality. My life is punctuated by cycles of ability and disability, and while I am in a place where I have more good days than bad, the uncertainty of relapse can leave me paused from moving forward with too much gusto when I’m well.
The Duality of Invisible Disability
Navigating life with an invisible disability brings its own set of challenges. Sometimes, I wish I didn’t have to explain why I can’t attend an event, finish a task, or eat and drink without restrictions. Other times, I appreciate the invisibility— it allows me to blend in, to escape scrutiny and awkward questions.
Some days I struggle with the term “disability.” Do I deserve to stand here on this day and say “I have a disability”. Am I really “disabled enough”? And other times, it’s painfully apparent that I don’t have the energy - enough spoons - to do all the things I want to do, today and maybe I won’t tomorrow either. I have to relinquish to the rollercoaster.
I realise that the label isn’t about comparison; it’s about acknowledging the realities of living with a body and mind that demand extra care.
Lessons from Disability
My path would have been so different if I had never struggled with Crohn’s disease, arthritis or depression. It has shaped who I am in ways I could never have imagined. In ways that I am not sad about.
The depth and growth I have experienced is unparalleled to the version of me who might have lived without the same challenges. I believe in the depth of my soul, that I needed these challenges to dig as deep I have, and to have sought out a path that was more calm and measured.
My disability has taught me to:
Rest, without guilt.
Empathise deeply with others’ struggles.
Believe people when they say they are hurting.
I wake up most days with immense gratitude for the leaps and bounds I have made to living well. These days it feels like the sun seems to shine a little brighter.
And while I can be thankful I am on the path that I am, I also feel deep sorrow for the little girl who was told she was fine when she needed help. I feel anger that I wasn’t afforded the empathy I so dearly needed when I was skipping classes in high school. I feel compassion for my family who tried to understand but were left without adequate support from the healthcare system.
A Path To Providing Healthcare
These experiences have shaped me as a healthcare practitioner. I have dedicated my professional life to creating a space where my patients feel truly seen, heard, and held—a space that was not available to me. While my story might shares similarities with yours, everybody’s experiences getting to this point are entirely unique. Our stories have been shaped by countless small moments that influence how we experience and internalise our struggles.
As I reflect on my journey, I am acutely aware of the privilege I hold in being able to access support and live with a condition that, while debilitating at times, allows for periods of stability. I also know that many others face systemic barriers, prejudice, and lack of access to services that should be their right.
To those who face visible and invisible challenges: I see you. I hear you. And I am committed to standing beside you in the fight for a world where every story, every struggle, and every victory is acknowledged and valued.