Reflections on Vulnerability, Chronic Illness, and the Lessons I Learned from I Am: Celine Dion

Your worth isn’t defined by your health, but by the light you shine despite the darkness. —Eline Duk

Documentary artwork of "I Am - Celine Dion, taken from Prime Amazon

There was a time in my life when documentaries and biographies just weren’t my thing. I couldn’t see the point in watching real-life stories when I could easily lose myself in scripted drama, reality TV, or the latest rom-com. But as life went on, I realised how incredibly enriching it is to learn from the lived experiences of others—the good, the bad, and everything in between. Documentaries became a gateway into deeper understanding, not just about others, but about myself too.

I began to embrace the rawness of people’s journeys—their life lessons, their triumphs, their heartbreaks—and I found comfort in knowing that even those who seem larger than life are still human. There’s something grounding about hearing people tell their truth, especially outside the facades of social media, curated perfection, and the constant pressure to have it all together. And don’t even get me started on wildlife documentaries—those take me to an entirely new world, one that’s both terrifying and breathtakingly beautiful.

But no documentary has touched me quite like I Am: Celine Dion.

It was a random late night, the kind of night chronic illness warriors know all too well—the battle between pain and insomnia waging war on my body. I decided to hit play on I Am: Celine Dion, thinking it would be background noise while I tried to distract myself from the discomfort of an endometriosis flare-up. I wasn’t prepared for the emotional rollercoaster that followed.

I had forgotten how much I loved Celine Dion growing up. My family had two of her CDs that I practically played on repeat (although my dad probably played them even more than I did). I loved everything about her—her voice, her fashion, the short haircut she rocked for a while, and her magical French songs that became part of my high school French class singalongs (only at home). She was the epitome of grace and power on stage. I even dreamed of one day seeing her perform live.

At one point, I remember being concerned about her relationship with her late husband, René Angélil, who was 26 years her senior. I judged their relationship harshly, questioning if he had groomed her and if her family had failed her. But as I grew older, I learned to mind my own business and not jump to conclusions about other people's lives. I realised how quick we can be to judge without context or understanding. And in time, I came to admire the deep love they shared—a love that carried Celine through her greatest successes and most painful losses.

But what really left a lasting impact on me was Celine’s vulnerability in this documentary, opening up about her battle with Stiff Person Syndrome. For those who may not know, Stiff Person Syndrome (SPS) is a rare neurological disorder that causes severe muscle stiffness and painful spasms, often leaving patients temporarily paralysed and unable to move. There’s no cure. No easy treatment.

As I watched her bravely share this part of her life, I found myself shedding silent tears. Her story was different from mine—SPS and endometriosis are two very different battles—but the pain, the struggle, and the isolation felt so familiar.

Here are five things Celine’s story made me reflect on, things I could deeply relate to as an endo warrior:

Having an illness that isn’t widely understood and can derail your dreams.

There’s nothing quite as disheartening as fighting a battle no one seems to understand. Both Celine and I live with conditions that aren’t easily recognised or even acknowledged by many. It affects your career, your ambitions, and your dreams. And often, you’re left wondering if people will ever take your pain seriously.

Experiencing moments of complete physical paralysis.

There are days when my body refuses to cooperate. Endometriosis has left me immobile more times than I can count, not exactly like Celine’s SPS though. Those moments are terrifying and frustrating, stripping away any sense of control over your body.

The debilitating pain.

Chronic pain isn’t just physical—it’s emotional and mental too. It eats away at you, testing every ounce of your strength and resilience.

Pretending to be okay for the sake of normalcy.

Sometimes you just want to experience a little normal life. So, you put on makeup, dress up, and show up, hoping no one notices the storm raging inside you. It’s not about being fake; it’s about reclaiming moments of joy in a life dominated by illness.

The reliance on medication to get through the day.

Like Celine, I’ve had to rely on a cocktail of medications just to manage pain and function through everyday tasks. The hope is always that these medications will help more than they hurt, but it’s a fine balance that requires constant adjustment.

What struck me most was how long it took for Celine to get a diagnosis—17 years. Seventeen years of living with an illness she couldn’t name, an invisible thief robbing her of comfort and freedom. I couldn’t help but think of my own journey with endometriosis and how hard it can be to find answers, let alone treatment.

I wish I had known about her struggles sooner. Not because it would have changed her circumstances, but because maybe I would have understood her tour cancellations better. Maybe I would have seen her vulnerability and felt a little less alone in my own battles.

The last scene of the documentary, showing Celine in the midst of a pain-filled episode, broke me. I may not have Stiff Person Syndrome, but in that moment, I felt connected to her on a deeply human level. My heart goes out to her and to anyone else facing chronic illness—whether silently or publicly.

If there’s one thing I’ve learned from this experience, it’s the power of vulnerability. We’re all doing the best we can with the hand we’ve been dealt. And sometimes, it’s okay to not be okay.

To anyone battling Stiff Person Syndrome, endometriosis, or any other chronic illness—please know you’re not alone. Take care of yourself. Protect your peace. And don’t let the world make you feel like your pain is invalid.

Thank you, Celine, for your bravery and your voice—on and off the stage. May we all continue to share our stories, connect with one another, and fight for a world that sees us, understands us, and supports us.

Sending love and light,

Hlengz - The African Endo Warrior

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