Let Lived Experience Lead the Chronic Illness Fight

By Pholo Ramothwala

Imagine going fishing for the first time. You have read the glossy magazine, watched all the tutorials, and bought every tool recommended by the experts. But the moment you stand at the edge of the water, rod in hand, you realise you have no idea how to cast the line or read the current. In that awkward, humbling moment, who would you trust to guide you? The person who studied fishing from a distance or the one who has cast a line thousands of times and knows the water by instinct?

This is where chronic illness teaches a similar lesson. In health care, research, and programme design, the people living with the conditions often remain unheard observers of their own stories. Clinical guidelines get the spotlight. Lived experience is treated like a footnote. And yet, those of us navigating chronic conditions daily hold insights that could transform how systems respond. We understand our bodies, our barriers, and our reality in a way no manual ever could.

This is my perspective on why lived experiences should be part of shaping our collective fight against chronic conditions, and what needs to change.

The Evidence Hiding in Plain Sight

People living with chronic health conditions are walking archives of evidence. Every decision we make, every challenge we face, every workaround we create is a form of data. It reveals why prevention stalls, why behaviour change is tough, and how stigma silently shapes our choices long before any health message reaches us.

Data may show that people skip medication. Lived experience tells you why: shift work that clashes with clinic queues, fear of judgement, the rising price of transport, or side effects no one warned us about. These are not excuses! They are the real variables that determine whether prevention succeeds or fails.

Behaviour Change Needs More Than Theory

The assumption that “knowing better means doing better” is one of the most persistent myths in public health. Anyone managing a chronic condition will tell you behaviour is shaped by stress, culture, income, identity, responsibilities, and the simple act of trying to survive.

We don’t make health choices in sterile conditions. When prevention messages ignore the context of real life, they set people up for failure. Then, unfairly, the system blames the individual instead of improving the strategy.

Research Is Stronger When We Shape It

There is nothing soft or sentimental about lived experience, it is a scientific asset. When people with chronic conditions help shape research questions, methodologies, and interventions, the work becomes sharper, more relevant, and more honest.

We know which outcomes matter in the real world. We can predict which solutions will collapse outside the training manual. We are not a threat to scientific objectivity; we are its missing partner.

Trust and the Quiet Weight of Stigma

For many of us, the hardest part of living with a chronic condition is not the condition itself, it’s the stigma surrounding it. Stigma at home. Stigma in communities. Stigma in workplaces. Sometimes even stigma in the health system meant to support us.

Including lived experience in programme design, communication, and leadership sends a powerful message: your story is valid. Trust grows from that simple truth. And in the world of prevention, screening, treatment, and long-term care, trust is everything.

Workplaces: The Untapped Engine of Wellness

Workplaces could be powerful drivers of chronic illness support, yet they remain one of the most overlooked spaces. Many employees quietly navigate fatigue, medication schedules, flare-ups, caregiving duties, or mental health struggles, often with fear of judgement or misunderstanding.

If workplaces listened to employees with lived experience, wellness systems would look very different: more flexible, more human, and far more effective. The ripple effects would stretch beyond productivity, to dignity, belonging, and long-term health.

Lived Experience Is a Prevention Tool We Keep Ignoring

There is a deep power in someone saying, “I have walked this journey.” This kind of credibility can’t be manufactured. It can’t be summarised in a pamphlet. People with lived experience can shift understanding, open hearts, and break stigma in ways formal messaging cannot.

They shouldn’t be placed on the sidelines. They should be leading prevention and awareness efforts, not as symbolic voices, but as core decision-makers.

My point!

In order to build better health solutions, lets meaningfully involve the people living them. Our fight against chronic conditions is incomplete as long as lived experience remains optional instead of essential. When we embed real-world insight into policy, research, communication, and workplace design, we create solutions that are human, grounded, and truly effective.

Lived experience is not an add-on. It’s a pillar of understanding we have left out for far too long. If we treated it as evidence, our response to chronic conditions would be stronger, more compassionate, and far more aligned with the people it’s meant to serve.