As part of the Chiesi UK and Ireland Look Beyond the Bias campaign, Jacqueline shares how living with a lung condition others can’t see has led to disbelief, lack of support at work, and a fight to access benefits

Jacqueline’s story:

Jacqueline, based in Wandsworth, lives with COPD – a chronic lung condition that makes it hard for her to breathe. Her symptoms began years before her diagnosis, but because the disease isn’t well understood, she feels her condition was often dismissed or downplayed.

“People didn’t believe me when I told them. I’d be struggling to breathe, exhausted after the simplest things, but because I didn’t ‘look ill,’ they thought I was lazy and exaggerating.”

At the time, Jacqueline was working as a cashier, a role that involved standing for long periods. “I asked if I could have a chair because standing all day was exhausting for me. They refused. No adjustments, no support. In the end, I had to leave my job because my health just couldn’t take it.”

COPD is often stigmatised due to its association with smoking in many cases, as well as underdiagnosed as the condition remains poorly understood, despite being the second most common lung disease in the UK, after asthma. Estimations also suggest that as many as two million people in the UK may be living with the condition undiagnosed.i For Jacqueline, the biggest barrier wasn’t just the disease itself, but the lack of empathy and support from those around her. “Living with something people can’t see means you’re constantly questioned – at work, when applying for help, even in social situations.”

The bias at play:

Her experience mirrors findings from a new Chiesi UK & Ireland survey of 1,148 people living with chronic or rare conditions, including: asthma, chronic obstructive pulmonary disease (COPD), rare diseases, those who have undergone organ transplants and parents of children born prematurely. It found that 70% of people with health conditions have experienced stigma, judgement or blame and that over 60% of people in work hide their condition from employers for fear of judgement. In London, where Jacqueline lives, the figures are even starker: 79% of people have experienced health bias, 78% have avoided being open about their condition and Londoners were most likely of any region (68%) to report that bias affected their ability to access treatment or support.i

For people with lung conditions such as COPD, this silence is particularly dangerous as these conditions already have poorer outcomes in the UK than in comparable countries, with one of the highest death rates in Europe, second only to Turkey.

Why Jacqueline wants to speak out:

Jacqueline believes sharing her experience is the only way to help others understand that not all conditions are visible – and that bias can be as damaging as the disease itself. “I wish people would believe us when we say we’re struggling. Small changes, like listening or making a simple adjustment at work, could make such a difference. No one should be pushed out of their job or made to feel invisible because their disease isn’t obvious to others.”