Living with a chronic condition is about far more than managing symptoms or attending medical appointments. For many people, it can bring feelings of isolation, uncertainty and frustration, particularly in the early stages after diagnosis.
While healthcare professionals play a vital role in diagnosis, treatment and ongoing care, they cannot always provide the day-to-day understanding that comes from speaking with others who are walking a similar path. This is where patient communities can make a real difference.
In this episode of the My Health Focus podcast, we explore the role that communities play in supporting people living with long-term health conditions. From sharing practical experiences and emotional support to helping people feel less alone, communities have become an increasingly important part of many people’s healthcare journeys.
Joining us is Bridget McNulty, founder of Sweet Life, South Africa’s largest online diabetes community. Together we discuss the value of lived experience, balancing peer support with expert advice, navigating healthcare inequalities and what healthcare professionals can learn from listening more closely to patients.
Top 5 highlights from the conversation
1. A diagnosis can feel surprisingly lonely
One of the strongest themes from the discussion was how isolating a diagnosis can feel, even when millions of other people are living with the same condition.
Many people are given information about symptoms, treatment options and potential complications, but far less attention is paid to the emotional impact of diagnosis. Finding others who understand what daily life feels like can be hugely reassuring and often helps people adjust more confidently to life with a chronic condition.
2. Communities provide support that healthcare alone cannot
Healthcare systems are often stretched, and appointments can be limited. Communities help fill some of those gaps by offering practical advice, shared experiences and ongoing encouragement between appointments.
They cannot replace healthcare professionals, but they can help people feel supported, informed and connected. Whether someone is managing diabetes, arthritis, a skin condition or another long-term illness, there is often comfort in learning from people who have faced similar challenges.
3. Lived experience and clinical expertise work best together
A recurring theme throughout the conversation was the importance of balancing lived experience with evidence-based information.
Patient communities can provide valuable insights into daily life with a condition, helping people navigate challenges that may never be covered during a clinical appointment. At the same time, communities have a responsibility to recognise where peer support ends and medical advice begins.
The most effective communities create space for both perspectives, allowing lived experience and professional expertise to complement one another.
4. Sometimes people simply need to be understood
Family and friends can be incredibly supportive, but they do not always fully understand the realities of living with a chronic condition every day.
Many people reach a point where they become tired of explaining symptoms, medication side effects or the impact that a condition has on their lives. Speaking to others who immediately understand those experiences can provide a level of emotional support that is difficult to find elsewhere.
Sometimes people are not looking for solutions. They simply want someone to listen and recognise what they are going through.
5. Listening to patients often reveals unexpected insights
One of the more interesting findings discussed was that despite the growth of digital content, many people still value printed information they can take home, read at their own pace and share with family members.
It serves as a reminder that assumptions are not always correct. The best communities continue to listen, adapt and respond to the needs of the people they serve rather than deciding what those needs should be.
Final Thoughts
The success of patient communities is not simply about providing information. It is about creating a sense of belonging.
For people living with chronic conditions, knowing that someone else understands the challenges, frustrations and uncertainties they face can be enormously valuable. As healthcare continues to evolve, communities are likely to play an increasingly important role in helping people feel informed, supported and connected.
Watch or listen to the full conversation to hear more about the lessons learned from building one of the largest health communities in South Africa.
About the expert
Bridget McNulty began her career as a magazine journalist following a summa cum laude degree in creative writing, and has since written the novel Strange Nervous Laughter (2008) as well as The Grief Handbook (Watkins, 2021) and the popular Substack newsletter Daily Glimmers. Bridget also co-founded the NGO Sweet Life Diabetes Community, which has become South Africa’s largest online diabetes community, through which she publishes books and a regular magazine. She has featured in Glamour, Women & Home, YOU magazine and more.
Medical disclaimer
This content is for general information only and is not a substitute for professional medical advice. Always consult your GP or a qualified healthcare professional if you have any concerns about your health.