The Diabetes Stigma
Living with diabetes is challenging enough: navigating the healthcare system, managing daily self-care activities and riding an emotional rollercoaster. On top of all of this, it appears that diabetes is becoming a stigmatised condition.
Diabetes-related stigma is a negative social judgement based on an aspect of diabetes or its management that may lead to perceived or experienced exclusion, rejection, blame, stereotyping and/or status loss.
Stigma is usually based on attitudes of fear and disgust and can be caused by the perception that others blame you for self-inflicting diabetes. It is a particularly worrying consequence of living with diabetes that needs to be acknowledged, understood and addressed.
The Australian Centre for Behavioural Research in Diabetes, a partnership for better health between Diabetes Australia – Vic and Deakin University, has been investigating diabetes-related stigma in a series of research studies. The first, published earlier this year, reviewed the literature and developed a framework to understand the cause, experience and consequences of diabetes-related stigma.
Experiences of diabetes related stigma
Many healthcare professionals and people from the general community do not believe that diabetes is a stigmatised condition, however those who have diabetes often report:
- feelings of failure, guilt, shame or self-blame
- feeling embarrassed or self-conscious when refusing unhealthy foods socially, or when injecting insulin or self-monitoring blood glucose in public
- worry about being treated differently
- worry about loss of relationships/changed relationships
- concern about job security or prospects if employers and/or colleagues become aware of their condition.
Consequences of diabetes related stigma
Diabetes-related stigma inevitably has negative psychological, behavioural and physical consequences for people with diabetes, such as:
- depression, anxiety or other psychological distress as a result of experienced or expected negative social judgements
- attempts to hide the condition, which can lead to further anxiety and less self-management (e.g. delaying or skipping insulin injections while at work)
- fear of negative feedback if optimal blood glucose levels are not maintained
What to do about it
If you feel that you have been stigmatised because you have type 1 or type 2 diabetes, consider the following:
Try being more assertive when explaining what you find helpful and hurtful:
- be firm but remain relaxed and use a steady tone
- use “I” statements that are brief and to the point (“I like”, “I want”, “I don’t like”)
- make the distinction between fact and opinion (“My experience is different”)
- use constructive criticism without blaming (“I feel irritated when I’m told what to eat”)
Seek help from healthcare professionals that motivate and support you, rather than discourage and judge you. Does your healthcare team:
- have a high level of expertise, do they meet your medical needs?
- take care of your emotional needs, are they people you like and do you believe they care about you?
- work in partnership with you, have you told them what you expect from them or what they can expect from you?
Consider joining a support group and/or online community
- Meet people who share similar experiences and can relate to what you’re feeling
- Follow @OZDiabetesOC on Twitter (Australian Diabetes Online Community) and chat to others with diabetes
- Visit ‘Who’s Who’ to find a support group or advocacy worker near you, who can link you with the local Equal Opportunity and Human Rights Commission, a disability discrimination legal centre or community legal services
If you experience severe emotional distress because of diabetes-related stigma:
- work with your GP or diabetes educator to identify how to manage it
- contact a psychologist or other mental health professional with an interest and expertise in diabetes
If you experience relationship issues because of diabetes or its management visit:
This article was originally published in Conquest magazine published by Health Publishing Australia
Ms Adriana Ventura, Dr Jessica L Browne, Prof Jane Speight and Kylie Mosely
Conquest Magazine, Health Publishing Australia