Working life with cystic fibrosis (CF) isn’t easy, but Tim Wotton is determined to keep building his career.
Having held several successful positions over 25 years, Tim says working life is more "business unusual" than "business as usual." However, he says that balancing employment with cystic fibrosis symbolizes his triumph in an ongoing battle: to live as normal a life as possible.
As a child, I was diagnosed with cystic fibrosis and wasn't expected to live beyond 17. Thankfully, I'm now 51 and surviving, though I still have CF and CF-related type 1 diabetes.
Both conditions mean I have to go through a daily two-hour medical regime. My schedule consists of about 40 tablets, inhalers, nebulizers, injections, and physiotherapy.
But, despite my illnesses, I have worked for over 25 years. It hasn't been easy, but as I managed my conditions, I honed my resilience enough to succeed in the workplace. Here's how.
CF and diabetes are essentially "invisible or hidden disabilities." On the outside, I generally look healthy, like my life doesn't depend on dozens of treatments to get me through the week. However, on the inside, my body deals with constant illness-related suffering and trauma.
I'm an Employee Engagement Specialist. I help find ways to increase satisfaction in the workplace and reduce employee turnover (i.e., decrease the number of workers leaving the company after a few months or years). My career depends on my ability to communicate well and connect with people.
Being a social person, I've always been an intuitive communicator. I'm also good at adapting my tone and approach depending on the audience's needs.
My need to work goes beyond making money
Unfortunately, I've always felt I must keep my conditions hidden to stay employed. As a business consultant, delivery is everything. The last thing I want to do is show any possible weakness.
Because work is more than just a way of making money to me. Building my career symbolizes my triumph in fighting to live as normal a life as possible. Every day I'm defying the odds and living with direction and a purpose. My job is proof that CF does not define who I am.
And all this battling and pushing has been worth it. Despite my challenges, I have successfully delivered corporate communications and strategies across huge companies like BP and Shell.
Would I say my days at work are "business as usual"? No, more "business unusual,” to be honest, but I make it work.
Work is one of my best distractions against chronic illness
A life-long condition takes up much of your time, physically and mentally. Sometimes, it can threaten to take up all your time - if you let it. Going to work and achieving career-focused goals is one of my best distractions. It's better than being at home and dwelling on my illness.
Ruminating about my health can be a slippery slope. Too much navel-gazing can lead to negative thinking like, "Perhaps I'm not fit enough to go to work."
Putting myself into a bubble would be the opposite of not letting CF hold me back. I can prove my worth, and I have done so, time and time again.
"Standard" working days with cystic fibrosis
I expect that few people with life-threatening illnesses say they have "normal working days."
Managing CF and diabetes at work can be an enormous challenge, even now that I'm used to keeping things private. Co-workers are often oblivious to the many "moments" I endure daily and mostly silently.
For example, there's my daily medical regime during work hours. I have many tablets to take, or I need to give myself diabetic injections over lunch. I may have to manage these things between meetings if I'm swamped.
It may sound odd to do physiotherapy or use a nebulizer in the toilet. Still, I've had to do so on many occasions.
Sharing my chronic illness status with an employer
Sadly, I've never been offered a job after I've discussed my health during the interview stage. To keep myself in work, I now don't reveal my condition until I've accepted a role.
I keep my health mostly under wraps at work, only telling people on a need-to-know basis. I want to stand out at work for my professional abilities and performance, not my disabilities.
Even so, when I have had to bring up my cystic fibrosis or diabetes, I've encountered stigmas such as ignorance, bigotry, meanness, bias, and ridicule.
One person who must be made aware of my condition is my line manager. I tend to inform them shortly after I start the job. Usually, once they've seen my delivery and warmed to me as a person.
Thankfully, I've had some worthy managers over the years. They understood my needs and gave me the flexibility and kindness required to keep myself healthy. With this kind of line manager, I can deliver my best work.
Resilience is everything
People with CF are some of the most resilient I know. That matters in the outside world, especially in a working environment. We try not to sweat the small stuff, keep our minds on delivery, and strive to make every day count.
My "Work Survival Mentality Kit" also includes valuable tools such as resilience, mindfulness, calmness, and compassion (for myself and others).
CF has forced me to live each day with focus and determination. I know how to set deadlines, appreciate the present moment, and use my coping strategies to get the job done. Meanwhile, resilience helps me brush off smaller setbacks and solve things worth worrying about. You could say that my health has forced me to look at the bigger picture.
These skills have helped me to be seen as a valued employee. Employers are invested in my ability to keep working and, thus, my survival. Proving myself an asset means managers are much more willing to accommodate my healthcare needs.
Finding this article useful?
Sign up to the Life Effects: Respiratory newsletter!
The future is bright(er)
Fortunately, tides are beginning to turn. The COVID-19 pandemic brought on a change in modern work culture. The general public has become more aware of invisible illnesses. In turn, employers must be progressive and advocate diversity, equality, and belonging. After all, doing good business means valuing inclusivity, not rejecting it.
Now is the right time to be more vocal about my health situation and super-strengths.
It hasn't always been easy, but times seem to be changing. There seems to be more understanding and kindness in the average workplace. Also, the "new normal" of remote and/or hybrid working helps my energy levels and ability to do all my medication.
We've not reached my dream yet, but we're getting closer. I'm hopeful that employees with invisible disabilities won't fear being transparent in the future. I hope employers won't view a worker's illnesses as a company burden. Instead, they'll value the person enough to make work accommodations unquestioningly.
I hope employees with invisible illnesses can one day say, "Oh yes, today's been business as usual."
The information presented is solely for educational purposes, not specific advice for cystic fibrosis management in the workplace. Please consult a professional who can apply best practices and appropriate resources to your situation.
NPS-ALL-NP-00701 OCTOBER 2022