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
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 likeâ€, “I wantâ€, “I don’t likeâ€)
• make the distinction between fact and opinion (“My experience is differentâ€)
• use constructive criticism without blaming (“I feel irritated when I’m told what to eatâ€)

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:

• Relationships Australia
• The Australian Centre for Behavioural Research in Diabetes

This article was originally published in Conquest magazine published by Health Publishing Australia