My Story

Being upfront has helped me maintain a working life

You wouldn’t think that Paul had any kind of illness. He is the father of three; he works full time and plays golf in his spare time. When diagnosed with pulmonary alveolar proteinosis (PAP) Paul’s main focus was to get on with his life and work – and after some time he did.

Paul was 35 years old, married and the father of an 11 year old boy when diagnosed with PAP. The next years he struggled to get back to a normal everyday life.

“I went in and out of hospitals for a long time. I was in intensive care and had several lung lavages. I didn’t have much energy for my son, and I had to go on long-term sick leave. It was frustrating. I just wanted to take charge of the disease and get on with my life.”

Getting back to work

When Paul was diagnosed he had to stop working and go on long-term leave for half a year. Getting back to work was an important step on the way back to a normal everyday life.

“I remember that I was itching to get back to work. I was missing the stimulation of having to meet deadlines and being a part of the labour market. So when I got back to my job after six months of sick leave I more or less started working like nothing had happened. I guess that the fact that I have always enjoyed working made it easier for me to pick myself up.”

Openness made work easier

From the beginning Paul was upfront and honest about his disease. He told his employer as well as his colleagues about his condition. And he was not too proud to ask for help when needed. That made it easier for the colleagues to understand the illness and how it could possibly affect Paul’s work.

“When I came back from sick leave everyone at work knew that I had been very ill and had been diagnosed with a rare disease. But it didn’t make a difference for them. They were supportive, but also good at treating me the same way as always. I think it made it a lot easier for me to find my way back to a normal working life.

Now, 12 years after the diagnosis Paul is still working fulltime as a civil servant. A part of his job is being on his feet round and about in the city. But it doesn’t exhaust him noteworthy.

“Of course I can feel out of breath sometimes. But it doesn’t worry me. I can do my job, I can be a dad, and I can even play a round of golf. Sometimes I nearly forget that I have a rare disease. So I am fine.”

Paul’s 4 tips to a successful work life

  • Be stubborn and refuse to give in to your illness
  • Be open minded about PAP to your employer and colleagues
  • Tell your employer how the disease will expectedly affect your work, eg. you need days off regularly to go to the hospital
  • Show that you are still yourself by acting as yourself and not as a victim


Get advice on how to maintain a healthy working life when diagnosed with PAP


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