Stigma is alarmingly prevalent within our diabetes communities. Recent research reveals that 89% of people living with diabetes have experienced stigma.
Diabetes stigma is a societal issue that can lead individuals to internalise negative beliefs about themselves, adversely affecting their self-care. This stigma is endemic in society, particularly evident in social media portrayals of people living with or at risk of diabetes. For example, a Daily Mail headline in June 2024, “Laziness puts nearly 13 million Brits at risk of diabetes and other long-term conditions.”
The impact of stigma on diabetes management
Nearly 60% of people with diabetes believe their high blood glucose levels are solely due to their own “bad” management. Often, individuals with sub-optimal treatment regimes feel they are to blame, despite the inadequacy of these regimes to suit their lifestyles. As healthcare professionals (HCPs), we can address clinical inertia through personalised care and collaborative working.
One of my patients with type 1 diabetes recounted:
“I lay on my bed, and the consultant came around. He said, ‘What do you expect? You don’t look after your diabetes levels, so you were going to have a heart attack”
Experiences of stigma in healthcare
- 1 in 5 people reported experiencing stigma from a healthcare professional at least a few times a year.
- Over half of 450 interviewees reported missing appointments due to fear of stigma.
A patient's voice as they came for a diabetes annual review:
“Don’t tell me off; I know it’s my fault. I haven’t been to my review for years because the last time I came I was told to sort myself out, and I haven’t, So, I thought, what’s the point in coming?”
People with diabetes are experts in their bodies, spending 8,756 hours self-managing with an average 4 hours a year with a clinician. By recognising and respecting this, and applying the biopsychosocial model to our care we can support people to make positive progress in health outcomes that are right for them. Providing a space for people to feel safe to talk about not only what they can and have succeeded in, but equally what has been difficult, and explore the reality of life right now. Working together to explore why the previous advice hasn’t worked and seek ways to adopt better self-care, easier. Whilst we strive to share best practices, our skills are in how we can adapt that into what's best and achievable for the patient right now.
Towards a collaborative and inclusive approach
Fortunately, NHSE has developed a tool for us, 'Language Matters,' designed by people living with diabetes, which helps us with appropriate language and explains life with diabetes from lived experience.
At RCN Congress this year, the Diabetes Forum had many conversations with members about stigma. Many nurses and HCSW talked about how this affected them personally. Collectively, our compassionate leadership can help to address the stigma we see in the workplace. Helping those around us use appropriate language and increasing knowledge of the complexities of living with this relentless condition.
As Maya Angelou said,
“When we know better, we do better.” Please read and share the 'Language Matters' document.
Get involved
Please sign the pledge to end diabetes stigma and discrimination.
Message us on X, @thercn, to let us know you are joining the campaign.
References
- Bolton,D. & Gillett. G (2019). The Biopsychosocial Model of Health and Disease: New Philosophical and Scientific Developments. Palgrave Macmillan, 2019. Web
- End Diabetes Stigma and Discrimination
- Language Matters: Language and Diabetes: NHS England
- McKechnie, V., Broomhead, A., Scior, K., Roe, D., & Oliver, N. (2024). Stigma experiences of adults living with diabetes: Results from a Diabetes UK survey. Diabet Med, 41, e15289. https://doi.org/10.1111/dme.1528