Who Am I? A Journey About Identity

Not long ago, I had a conversation with my daughter that caught me off guard, though not for the reasons one might expect. We sat together, enjoying a rare moment of quiet, when she said something that made me stop and think. "You know, Mom, I don't define myself by my rare disorder. It's a part of me, but it's not who I am.""

Rare disease and personal identity

Her words hit me like a freight train, not because I disagreed with her, but because they were so genuine and yet so rarely said. As someone who has spent much of my life advocating for individuals with chronic illnesses—many of them, like my daughter, fighting battles that most people will never fully understand—it's easy to fall into the mindset of seeing them as their diagnosis. I've even done it with myself, unconsciously tying my sense of identity to health struggles that shape my life.

Reflecting on identity

It made me reflect on a deeper question: Who am I, really? And who do we become when health challenges dictate so much of our day-to-day existence?

Recognizing your values

Growing up, I was taught to value resilience. Although this was often unspoken and passed down through the actions of those who came before me, it was clear that strength and fortitude were to be admired.

I carried that forward into adulthood and later into parenthood. When my daughter was diagnosed with a rare disorder, I braced myself. We were strong, I thought, and we could handle this. But I also started to see how easily we—both as individuals and as a family—could become consumed by a diagnosis to the point where it starts to shape our entire identity.

At first, I didn't see anything wrong with that. After all, when something changes your life so drastically, doesn't it make sense for it to become a core part of who you are? For a while, it seemed like the natural thing to do, to integrate my daughter's health struggles into every aspect of how I viewed her and, to some extent, how I viewed myself as her caregiver. But her words that day made me reconsider everything.

Your diagnosis doesn't wholly define your essence

She was right. Her disorder is part of her, but it's not the whole story. It's not the whole story for any of us who live with chronic illness or for those who care for loved ones who do. These conditions certainly shape our experiences, challenges, and daily lives, but they do not define the essence of who we are.

In my daughter's case, she's a teenager with a love for music, a sharp wit, and a deep sense of empathy. Her disorder may impact what she's physically able to do on some days, but it doesn't change her core passions or her ambitions. She's not her diagnosis. She's herself, in all her wonderful complexity.

How do we define ourselves?

So, how do we identify ourselves when living with—or caring for someone with—a chronic illness? Making it central to our identity is tempting because it takes up so much mental, emotional, and physical space. But the reality is that while our health struggles are part of our story, they are just one chapter. They can't overshadow everything else we are.

We are friends, siblings, parents, artists, entrepreneurs, dreamers. We are defined by our relationships, values, interests, and contributions to the world.

I think that's one of the most important lessons I've learned—not only as a mother but also as a person living with my own set of health challenges. It's a reminder to myself and to everyone who faces a chronic illness that we are so much more than what our bodies might endure. It's a reminder to give ourselves permission to embrace our full identity, to not be reduced to just one part of our existence, even if that part is heavy and demanding.

Parting words

My daughter's words will stay with me: "It's a part of me, but it's not who I am." And for everyone living with a chronic condition or rare disease, I hope that resonates. You are not your diagnosis. You are a whole person, full of layers, experiences, and potential. Yes, your health journey is part of your life, but it's not the full definition of who you are.