Skip to main content

What's It Like To Live With a Chronic Condition?

Eleven CSL employees spent 24 hours immersed in the daily reality of being an asthma patient. The experience was an introduction to the interruptions and frustrations that arise.

Woman reaches for an asthma inhaler.

Most of us start the average workday with a plan, even if it’s a loose one, to go about our tasks. We knock out items on the to-do list and balance all that with personal responsibilities that we will attend to later, like picking up the children or checking on an elderly relative.

Now, imagine that typical day alongside the unpredictability of a chronic illness that flares up without notice. In a moment, your original plan can go up in smoke and you must quickly pivot. Eleven employees at CSL, a global biotech with makes medicines for serious diseases, recently participated in an exercise that simulated a day in the life of a patient who has asthma, a condition that causes episodes of breathing trouble.

“No matter how well we think we understand the lives of patients living with a medical condition, we can always learn more. We wanted to gain a visceral understanding of the situations, burdens and challenges these patients face each day,” said Sylvia Herget, who is based in Marburg, Germany, and is CSL’s R&D Director of Patient Partnerships.

For 24 hours, participants used an interactive app to integrate the experience – including live role playing – into their daily routines. They encountered firsthand the anxieties that arise from situations like calling a less-than-supportive manager at work about an asthma flare.

“We not only gained insight into the medical intricacies faced by asthma patients, including anxiety and time demands associated with interventions, but also gleaned invaluable perspectives on the profound impact on their mental well-being and the far-reaching consequences affecting their professional, familial and social spheres, Herget said.

CSL makes medicine for another condition that impacts breathing – Alpha 1 Antitrypsin Deficiency. Also, in recent years, CSL has been supporting research into fibrosing interstitial lung diseases, a group of conditions that are difficult to diagnose and treat.

The asthma patient simulation doesn’t compare to actually living with the condition, but it did broaden the understanding participants have about how wide-ranging the impacts of asthma can be, Herget said. They now better appreciate some of the ripple effects such as feelings of shame, the sting of being misunderstood and excluded by friends and frustration due to missed opportunities at work.

“We should all be guided by this perspective and understanding, applying it to everything we do for our patients,” she said.