How a YouTuber on the other side of the world gave me the hope I needed

When I was 15, I became chronically ill. I gave everything I had into fighting my illness with the hope of returning to my old life.

Three years later, I stopped believing I was going to get better. It took two years for me to tell anyone this, in part due to being deeply ashamed I felt this way, and in part because I was fearing what a life in a body that functioned so poorly meant.

My illness, though not terminal, felt unsurvivable. I became depressed. In this time of grief and suffering, I found American activist Claire Wineland on YouTube.

YouTuber and disability activist Claire Wineland.Credit:YouTube

Claire, who was born with cycstic fibrosis, was the first person to give me hope that being sick was not the end of my life. While everyone around me assured me I would be cured, which I did not believe, she told me that I could still have a life of value in a broken body.

It wasn’t only the speeches she gave, she was the living embodiment of her message. Though she only lived 22 years, she gave more, lived more and achieved more than most people who live decades beyond her. She started a charity, co-authored a book, had a successful YouTube channel, travelled the world giving speeches, worked on a movie: she was dying and had to spend so much of her time looking after her health, and yet she was incredibly successful and lived a beautiful, messy, wonderful life.

She was proof that it was possible for me to live a life while sick without having to fundamentally change who I was as a person.

Claire was the first person to give me hope that being sick was not the end of my life.

A final gift from Claire, a YouTube Original documentary short entitled Claire | The Documentary, was released earlier this month. You might have seen it promoted heavily on the YouTube homepage. At the time of publication, it has been viewed close to 400,000 times.

The film is a beautiful epilogue to her existence. It is a combination of new interviews conducted towards the close of her life, archive footage from her YouTube channel, and family videos. It solidifies all she was, all she gave, and her message.

Claire says in the documentary that “it is important to have people who are sick, who are actually living full lives, so that kids like me, so that little Claire, doesn’t have to feel like all there is in the world is being someone’s pity case … that there’s a life for her to live and that it’s going to be wonderful”. She was that person for me. Even though I was not a child, I was only a few years into my life as a chronically ill person, and that message saved me.

Although there are many people with disabilities who give speeches that others find inspiring, they never resonated with me. Claire spoke about the suffering, the grief, and pain associated with serious illnesses. She never shied away from it; instead she reframed it in a way that was empowering. She told us that achieving our goals was not going to be easy or a fairytale, but it is possible.

In an interview for the documentary, she says, "What makes the most impact in what you’re doing in your life [is] making small every day decisions to show up."

For the sick person who looks at the above and thinks showing up is beyond them, I’d like to say: I was once there too. The thought of attempting what I wanted to was terrifying to me and it appeared impossible. I’d been so beaten down by the world that my dreams felt unachievable. But, in the past two years, I have been dragging myself out of my hole, and though progress is slow and painful, it has been made.

Though I still struggle with poor mental health as a result of my illness, trying to do something of value with my life has helped me monumentally. I've taken screenwriting courses, and interned at a film festival: all things I did not believe would be possible without me first returning to full health.

I had hoped that one day I would achieve what I am seeking and I would be able to thank Claire for what she gave me, but sadly that chance is gone. Instead, I would like to say that we could all live more like Claire. I hope we all can live bold, messy, incredible lives, and find peace in our existence.

Claire said her mission statement was “to dignify people who are sick and to inspire them to live their lives fully while they’re sick and not wait around for someone else to come and fix them before they’re who they need to be”. She did that for me, for many others, and maybe for some of you.

Natalia Stawyskyj is a 21-year-old aspiring screenwriter from Sydney.

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