My Search for Happier, Healthier Work

Elly Aylwin-Foster avatar

by Elly Aylwin-Foster |

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Hello there, and welcome to my column!

This is a place to talk shop. Work. Jobs. Careers. Whichever term you prefer.

In the not-too-distant past, I was a wide-eyed, coffee-swilling exec with a penchant for checked trousers. I worked in a trendy digital agency in London. (Trendy enough to have the company name hoisted above reception in bright, neon signage, you ask? Yes, that trendy.)

Throughout my 20s, I prided myself on the number of hours I worked and the amount I coped with in terms of my CF and working life. With a background in advertising, I internalized the mindset of “more is always better” when it came to work.

I found some balance in the last 18 months as I cut my hours slightly and prioritized staying fit and avoiding smoky pubs (secondhand smoke of course, as cigarettes are the devil). But I often wondered how long my lifestyle would be sustainable. At what age would the hours I put in be repaid with an irreversible decline in lung function?

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Then, last summer, I was hit with a hat-trick of self-realizing moments. First came a move to a new city, Cambridge, away from the bright lights and heavy air of London. Then, a milestone birthday: I turned 30. And finally, I found myself searching for a new job, all in the space of a fortnight.

My partner continued to commute to London every day and did an excellent impression of a productive, upstanding member of society. Meanwhile, I wallowed. Often in pajamas. I spent hours trawling LinkedIn. Hours working through my presumptions, beliefs, and self-doubt about what I should be doing, and what I thought I could do. And finally, what I wanted to do.

I knew that I wanted to work in a different way. I wanted to build a career that allowed me flexibility, a short or nonexistent commute, and if I’m honest, fewer hours but not significantly less money. I wanted a career that didn’t make me sick so often from stress, tiredness, and lack of movement. And I didn’t want to face years of declining health before I’d at least tried to make a living doing what I love: writing.

Dear reader, I almost certainly won’t have all the answers; indeed, I cannot advise, only share experiences and existing guidance. Throughout this column, I will faithfully share with you episodes of my past working life — from the time I self-administered IVs in a meeting with my managing director in a perhaps misguided attempt to raise awareness of CF, to the lessons I learn from freelancing in coming months.

I will report back on how my sanity and conversation skills are holding up while I rely on the companionship of my two cats during the long hours working from home. Don’t let the fluffers fool you, they are cruel taskmasters.

I want to go beyond my personal experience by speaking to others with CF to provide a realistic picture of what the CF community does for work. I also want to investigate how common entrepreneurship and self-employment are among us, to question how each of us find meaning in our careers, to highlight the dedication many CFers show simply by turning up every day, and to look at practical issues like calling in sick and avoiding germs in the office. I also want to speak to people who have spent time working on interesting voluntary projects, such as blogging on an underreported topic, creating art, or conducting online advocacy.

Many of us cannot work or cannot work right now. Please always remember that our worth is never measured by the work we do. Our value to society can never be represented in “net payments,” despite the way social security and welfare departments can sometimes make us feel. And yet, more people with CF are in some form of work than ever before. It’s exciting! I think it’s time to have these conversations, about our futures and our ambitions. It’s time to address the challenges and to question how each of us can find work that works for us.

To read more about my projects — some of which I’d love your involvement in, such as the book I am writing — visit professionalsickgirl.com.

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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.

Comments

Gisele Lapointe avatar

Gisele Lapointe

Elly,

I don't have CF myself, but unhappily I gave birth to a daughter who was diagnosed at the age of 19, and she suddenly had to envision the possibility of dying in a relatively short time. Yet, she graduated, worked, married and had 3 children. At the age of 40 it became obvious that the disease was gaining ground and therefore it was urgent to get new lungs. Alas, it was too late to wait for a cadaver transplant, so she was transplanted a lobe from both her brother and her husband (a just approved transplant done at USC). She survived 2 years. That was 15 years ago. Since then I have kept abreast of the many encouraging developments that have been tried, encouraged, approved and look promising, and I am wondering "what if a cure is found in the next 10 years? Since the gene was identified in 1989 so much progress has been achieved. I may be delusional but I am more and more convinced that this may be possible.
I wish you the best of luck and will be following your journey with great interest.

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Sherri Compeau avatar

Sherri Compeau

Thank You Gisele for your kind words. I am, also, sorry about your daughter. I am 46 years old with CF. I was diagnosed in 1973 when I was 3 months old. I wasn't able to have children. I am glad she was able to; so that, you are able to see her in them. We are living in a time of Great Accomplishments. I am optimistic on the long life I will be able to live with them. But nothing beats the Love of ones family to give a reason to live. Don't underestimate the power of God and Love. Thank You again.

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