My name is Willem Wery, and I have cystic fibrosis. Although this may sound a bit like a confession, the truth is that my health was a closely guarded secret for most of my life.
I was diagnosed with CF at the age of 8 along with my little brother. Although my brother's symptoms and diagnosis involved his lungs, my CF primarily affected my digestion, requiring pancreatic enzymes with meals. I didn't want to be treated differently, so as a young boy in school, I learned to discreetly take my enzymes with my lunch and snacks so that the other kids wouldn't notice.
My “discreet enzymes trick” continued as I grew up and went to college. I thought for sure my girlfriend at the time -- now my wife of 34 years -- had noticed me taking enzymes with all the meals that we had together. But after dating for 6 months, she was shocked when I told her about my CF.
After college graduation, I started my first “real” job at a multinational technology company in New York. As a newly married man starting this adventure in a new location, I made the decision to keep my CF diagnosis private … my secret. Similar to my school days, I didn't want people to think I was different. I didn't know how people would respond in a business environment. Would my career be limited? I didn't want any sympathy. I wanted to be evaluated on the merits of my work.
Even though I was living with CF, I was lucky to only need enzymes with each meal, as my lungs were still largely unaffected and I rarely got sick. Because of this, I was fortunate enough to take part in many aspects of life. I worked throughout the week while weekends were spent water skiing, snow skiing, hiking, and camping. Over time, I did disclose my CF to some close friends -- but this disclosure was very limited, and it was still a closely guarded secret.
After many years, we moved back to the west coast and I started a new job at a different multinational technology corporation. However, the previous decision to keep my CF diagnosis a secret remained.
At 39 years old, I was diagnosed with my first serious CF exacerbation and hospital stay. My pulmonary function tests (PFTs) had been slowly declining for years, but now I was really sick. This all happened to occur just as my team was preparing to leave for the largest technology conference of the year. I still hadn't told anyone about my diagnosis, but I needed a valid reason for not being able to attend. So, I told them that I had a staph infection in my lungs that required antibiotics. Everyone understood, and my team picked up the slack.
It wasn't until late in my career -- at about 52 years of age -- that I decided it was time to disclose my CF secret to my boss of five years and a close working colleague on a trip to Germany. CF was affecting me more and more, and they needed to know what was going on.
As my career continued, it became increasingly difficult to do regular work. I realized it was time to heed my doctor's advice and follow my gut instinct to focus on my health and my treatments. My career ended when I went out on medical disability. It was finally time to break my silence.
I sent out an email to my team and colleagues with my plans for leaving and my “secret” CF diagnosis. The email brought many well wishes for a “speedy recovery and return to work.” It caught many people by surprise, as I had kept my secret so well-contained (although it did help them understand my coughing in the workplace).
Finally, my CF secret was out. I had made a successful career in a challenging, high-paced environment for 31 years. That chapter of my life was complete. Ever since that day, I have openly shared my CF diagnosis.
During a serious hospital stay a couple years ago, a singer-songwriter friend, David Blair, wrote a song for me titled “Take a Breath (Breathe).” It's a beautiful song, and he captures some of my feelings as to why I kept my CF a secret with the lyrics:
And I don't want you to know
'Cause I don't want you to cry for me
But it'd be nice to take a breath
And breathe deep
Tell myself I'm fine
Ignore the whispers that say otherwise
Don't wanna think about my time
I'll never be done with this fight