How Does Cystic Fibrosis Affect Our Fear of Failure?

Elly Aylwin-Foster avatar

by Elly Aylwin-Foster |

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I was made redundant last year. A week later, I turned 30. One week after that, I found out that I had failed to make it into the preliminary stages of the first publishing competition I’d entered. Then the following week, I was admitted to hospital with one hell of a cystic fibrosis (CF) exacerbation.

I guess there’s an element of, “Well, no s*** Sherlock,” tied to that order of events.

The redundancy wasn’t performance-related; layoffs were part of a company restructuring plan. But it hit me hard. It’s not the sort of thing that happens to successful 20-somethings, I told myself. But redundancy is a common outcome in the labor market, affecting almost 100,00 workers over three months of 2018 in the U.K., with 1 in 10 workers fearing redundancy in 2019. In the U.S., there were 1.7 million layoffs in April 2018.

The worst part for me was that it was the first workplace where I had been “radically transparent” about my CF. I talked about treatments openly with anyone who asked. I became a healthcare subject matter expert in my role. I even discussed my condition in an interview. I felt that my workplace accepted all parts of me. To clarify, I do not believe there was any foul play in the redundancy process — the company was supportive of my health while I worked there.

But those living with CF understand that it’s impossible to completely separate our feelings of acceptance and rejection from our illness. On my darkest days, as I struggled to see a new vision of happier, healthier work, I listened to the little voice in my head telling me that CF was part of my failure. I allowed myself to believe, if only for a while, that I wouldn’t find a way to be successful if I couldn’t commit to a traditional 9-to-5.

This belief was at its most brutal when my health was so poor that getting through one single 9-to-5 in a week was barely possible.

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The list of successes that have come since then has been both personally and professionally affirming. I was published in a national newspaper and I currently have similar writing in the pipeline. I landed a column with Cystic Fibrosis News Today. I was chosen to be part of an expert patient steering committee for one of the biggest pharmaceutical conferences in the world. And I’ve been offered life-changing opportunities to represent my work and my passion for health in other exciting ways.

Just three months ago I would have struggled to believe such outcomes were on the horizon. I was still transitioning between my old markers of a successful life to my new one. I am not the girl who strides to work in a glass-encased office with a perfect, milk-art heart latte in hand anymore. I am immune to brands who email me at the month’s end, with cute emoji subject lines imploring me to buy this month’s killer sweater.

I am currently self-employed, so I ain’t got that kind of cash to splash. The word “payday” is not the siren song it once was, as I now rely on smaller lump sums throughout the month and some serious budgeting techniques.

For the first time in my life, I am working toward goals that tick the “achievement box.” It is fulfilling in ways an adorable (faux, of course) animal print sweater could never be.

If you are living with CF or caring for someone who is, you may be familiar with the idea that illness is a burden. It doesn’t matter how many times you tell them — or they tell themselves — that they are more than their disease, our cystic fibrosis will sometimes make us feel we’ve failed, whether it’s because of a health exacerbation or a desire to do something we find physically challenging.

We feel this sense of failure despite our community’s countless inspiring examples of success: bodybuilders, Guinness World Record holders, personal trainers, teachers, parents, artists, and writers.

The future is bright right now. Painfully bright. Although in my case that could be thanks to the light-sensitizing effects of my new medication.

I can promise you one thing, dear reader, I will never explore a career in stand-up comedy.


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.


Gail Mills avatar

Gail Mills

Thank you for the article on Failure. I am a grandmother of a 5 year old with CF. She brings me joy every time I see her. People who encourage others who are struggling with illness and encourage others, can't be failures. They are companions on a difficult journey. They are bringers of hope.


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