I’ve recently become a columnist for CFNewsToday. I publish weekly on the topic of working and professional life with Cystic Fibrosis. I highly recommend you head over there to see the most up-to-date posts, but from time to time I will share them here.
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?
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.
Re-published from cysticfibrosisnewstoday.com with permission. View the original column here.