After navigating vision loss, stroke recovery, and an amputation, Salih Hendricks shares how lived experience can reshape healthcare
Salih Hendricks is a 60-year-old advocate and researcher based in Cape Town, South Africa. He has lived with Type 1 diabetes for 44 years, having been diagnosed in 1982 at the age of 17. Over the decades, his journey has included numerous diabetes-related complications, including vision loss requiring laser treatment, peripheral artery disease, neuropathy, an above-knee amputation, and a haemorrhagic stroke.
Despite these life-changing challenges, Salih has dedicated his career to advocating for people living with diabetes, obesity, disability, and other chronic conditions. He currently serves as a Research Assistant with the Inclusive Practices Africa Research Unit at the University of Cape Town, where he works to ensure that lived experience is recognised as an essential component of healthcare, research, education, and policy.
You were diagnosed with Type 1 diabetes at a time when there was little education or support available. What was the hardest part of learning to live with diabetes without the resources people have today?
When I was diagnosed in 1982, diabetes education was almost nonexistent. No Internet, no support groups, no continuous glucose monitors, and very little understanding of what living with diabetes meant. I was simply told to inject insulin and avoid sugar. Nobody explained that diabetes would affect every organ in my body, my emotions, my future, or the decisions I would make every single day.
The hardest part was learning entirely through trial and error. Every high blood sugar, every severe low, every complication became my teacher. Looking back, I often think that education is just as important as insulin. Insulin keeps you alive, but education teaches you how to live.
Many people think diabetes is only about managing blood sugar, but your story shows it affects every part of life. How has living with diabetes shaped your understanding of health, independence, and daily decision-making?
Living with diabetes has taught me that health is far more than numbers on a glucose meter. Every decision I make, what I eat, how much I sleep, how I manage stress, whether I exercise, when I drive, even whether I attend an event, requires thought because diabetes is always present. Over the years, I have come to understand that diabetes is biological, psychological, emotional, financial, social, and environmental.
It is never simply about blood sugar. It influences relationships, employment, mobility, mental health, and independence. My lived experience has taught me that good diabetes care must recognise the whole person, not just the condition.
Your amputation changed your life physically, emotionally, and socially. What do people often misunderstand about the journey of adapting to life after an amputation?
Many people believe the hardest day is the day you lose your limb. In reality, that is only the beginning. The true challenge is rebuilding your entire life afterwards.
People do not always see the invisible struggles, phantom pain, balance problems, learning to transfer safely, adapting your home, accepting your body, dealing with public reactions, or simply finding the confidence to leave your house again. An amputation changes your identity as much as it changes your body.
What people often misunderstand is that rehabilitation is not just physical. Emotional rehabilitation is equally important. Learning to believe in yourself again takes time, patience, and support.
What did that process of rebuilding your confidence and identity look like for you?
My confidence did not return overnight. It came through small victories.
The first time I transferred independently into my wheelchair.
The first time I stood with my prosthesis.
The first time I walked again.
The first time I drove my car independently.
Each achievement reminded me that disability did not define my future. I also realised that my lived experience had value. Instead of asking, “Why did this happen to me?”, I started asking, “How can my experience help someone else?” That change in perspective transformed my identity from being a patient to becoming an advocate.
You have experienced both public and private healthcare systems in South Africa. What are the biggest gaps to be addressed with chronic conditions?
South Africa has dedicated healthcare professionals in both sectors, but there are major inequalities. Many people struggle to access insulin, diabetes education, rehabilitation services, prosthetic care, mental health support, and newer technologies. Geography, income, disability, and socioeconomic status often determine the quality of care someone receives.
We also focus too much on treating complications instead of preventing them. We need multidisciplinary care where doctors, nurses, dietitians, psychologists, physiotherapists, occupational therapists, podiatrists, and people with lived experience work together as partners. Healthcare should aim to extend life and help people maintain dignity, independence, and quality of life.
What difference has technology made in your daily life, and what concerns you about unequal access to these tools?
Using a continuous glucose monitor completely changed the way I manage my diabetes. For the first time, I could see what my glucose was doing every minute instead of relying on occasional finger-prick tests. It gave me greater confidence, reduced anxiety about severe hypoglycaemia, improved my decision-making, and helped me understand how food, stress, illness, and activity affected my body.
My greatest concern is inequality. Many people who would benefit most from CGMs simply cannot afford them. Technology should not become another marker of healthcare inequality. Access to life-changing diabetes technology should depend on clinical need, not financial privilege or where someone lives.
You regained your independence by returning to driving just months after your amputation. What did that milestone represent for you?
Driving represented freedom. It meant I could work, attend appointments, visit family, advocate, and participate fully in society without constantly depending on someone else. For me, driving was never just about transportation. It represented dignity, confidence, and reclaiming control over my own life. After losing my leg, regaining that independence reminded me that disability does not mean inability.
You now advocate for others living with diabetes and disability. What have you learned from listening to other people’s stories that decision-makers need to hear?
Every person’s diabetes journey is different. What I have learned is that healthcare systems often measure blood sugar, blood pressure, and laboratory results, but they do not always measure fear, stigma, loneliness, financial hardship, or emotional exhaustion. People living with chronic conditions become experts in their own lives. Their knowledge should not be viewed as secondary to clinical expertise. Healthcare works best when lived experience and professional expertise are respected equally.
Nothing about us should be decided without us.
Living with diabetes complications, stroke recovery, and amputation requires significant adjustment. What role have mindset, patience, and support from your family played in helping you move forward?
Recovery taught me that healing is not always about returning to who you were before. Sometimes it is about discovering who you can become. Patience has been essential because recovery cannot be rushed. Every small improvement matters.
My family has supported me through some of the darkest periods of my life. Their encouragement reminded me that I was never facing these challenges alone.
My faith has also been a source of strength. It has taught me patience, gratitude, perseverance, and hope, even during the most difficult moments.
If you could speak to someone newly diagnosed with diabetes, or someone facing complications and feeling overwhelmed, what would you want them to understand about their future and their ability to still live a meaningful life?
Diabetes may become part of your life, but it should never become your identity. There will be difficult days. There will be moments of fear, frustration, and uncertainty. But there will also be moments of strength that you never imagined possible. Don’t compare your journey with someone else’s. Learn about your condition, ask questions, seek support, and remember that perfection is not the goal; progress is.
Even after losing my leg, surviving a stroke, and living with multiple complications, I continue to advocate around the world, contribute to research, and help others find hope. Your future may not look exactly as you planned, but it can still be meaningful, purposeful, and filled with opportunities to make a difference.
My message is simple: never lose hope. Diabetes may change your path, but it does not have to define your destination.
Images: Unsplash/Provided
