Teen Living with Cystic Fibrosis Celebrates Life, Challenges Stigma of Death on YouTube

According the Cystic Fibrosis News Today, when Claire was first born, she was only expected to live to the age of 10. Then Claire’s life expectancy lengthened to 18, and now, it is mid to late 20s. Despite her rather short life expectancy, 19-year-old Claire shows no fear.
In fact, she has a popular YouTube channel dedicated to discussing her life with cystic fibrosis (CF) and what it feels like to be chronically sick and dying.
An often terminal and progressive disease, CF damages the lungs and digestive system. Claire is no stranger to the idea of mortality, and with an ever-looming life expectancy before her, she does not shy away from discussing disease and death on her growing YouTube channel.
The website Cystic Fibrosis News Today features Claire in an interview talking about her bravery and boldness in confronting her condition, and sharing it with others online. Any viewer of the video can see that Claire is a smiling, charismatic young woman. Even as she mentions that her disease will eventually kill her, she gives a good-natured chuckle. There is no fear or denial in her eyes.

Claire has used her disease and her life to make a point to explain to others that having a terminal illness is nothing to be ashamed of. Claire explains that many people who have cystic fibrosis are very secretive and ashamed about their terminal disease and the fact that they are slowly dying. She says to the camera:

It doesn’t have to be this dark hidden secret that you’re dying.

This idea that disease and death do not have to be shameful or secretive is what inspired Claire to make her YouTube channel and be transparent and educational about her CF.

If you venture to Claire’s YouTube channel, you can find all types of videos on different subjects, from what it is like to be in a coma, to what not to say to people who are sick. One of Claire’s goals for her channel is to explain how cystic fibrosis feels without being overly dramatic or depressing. Claire explains how CF feels like you have sand in your lungs, and you feel heavy and tired.

Claire seems to celebrate the joys of life and living. Although Claire humorously describes herself as a grumpy old man sometimes, her videos show a light, energetic and funny side of her personality.

“Death is scary because it’s so foreign,” she says.

The way she inspires me, is instilling the idea that anyone can live a life that they are proud of. In my opinion, Claire bravely and openly embraces her life with cystic fibrosis and encourages everyone, those living with a chronic disease or not, to do the same.
Check out Claire’s YouTube channel here. Check out Claire’s full interview here.

And, to find out more about CF, check out our partners Cystic Life and the Strawfie Challenge.

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