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Nothing sweet about it: Stigma and living with diabetes

This week I began teaching on online class on poverty and global health. The first assignment was for students to write briefly about their personal experiences with health inequities. The posts were honest, interesting, and many converged on what seemed like the most common recurring theme: the trials of them or a family member living with diabetes. They talked of sky-high and often unmanageable costs of the medication, and the dreadful mess of trying to navigate both care and insurance.Diabetes is a complex, and expensive, disease to manage. I had it myself for a few months while pregnant, and boy was it really hard, constant work to maintain the recommended blood sugar levels.

And, the stigma.  Judgment around diabetes, both its treatment and failures of tretment can be intense. Much of the stigma around the disease seems to stem from the idea that diabetes is a so-called lifestyle disease, one caused by a lack of self care, that you “let happen” to yourself. It’s associated with being overweight, a highly stigmatized condition in many quarters where the person is labeled as “lazy” or “let themselves go”.

The shame means people report avoiding getting a diagnosis, staying away for the judgments of doctors:

The dietician was awful…she asked me if I exercise and I said ‘I do the gym twice a week and I have consistently since November’ ‘that’s not enough, you need to go five times a week’…this makes me really angry (woman, 35 years)*

Many don’t want to tell friends, co-workers or even their spouses:

I don’t want people to think I developed this disease because I was some big fat that never got off her chair…I was active, exercised, worked, everything…it doesn’t have to be from your lifestyle but I think most, well that’s how they portray it in the media…they show all the time ‘there’s this diabetics epidemic’ and all you see is fat people, not their heads, these big bums and tummies and all that and you think ‘do people think I was like that, that I looked like that?’ (woman, 60 years)*

Diabetes is also stigmatized by being associated with poverty and chronic illness. This isn’t anything new. In the early 1980s, Susan Hopper explained how health care professionals would get frustrated and annoyed with so many of their patients being “non-compliant”, not following the treatments they set, but not fully understanding that the diets they wanted people to follow – with lots of fresh foods – were expensive and even unaffordable. For those on disability or social security checks, any money for healthy food ran out well before the end of the month. In the last several decades since the costs of diabetic care have skyrocketed in the US, and insurance has become more tricky as a result just navigating the complexities and costs of care itself is unravelling “compliance” and adding to the stigma of diabetes as a disease of people who can’t look after themselves. Here are some recommendations on what medical professionals can do to help.

Other associations of the needles and insulin pumps with drug use add additional stigma outside the clinic. People don’t want to be seen “shooting up” in public case they are mis-identified as addicts. So they delay or avoid their self-treatment.

Some research in the US has suggested that people with well-treated diabetes are actually more stressed and depressed, just because the treatment itself is so hard to manage, both in terms of the care and the cost, and also the social messages it conveys. Stress in itself actually feeds diabetes, because stress hormones in the body alter blood glucose directly.

Lesley Jo Weaver doing field work in New Delhi: source http://ljweaver.people.ua.edu/research-in-india.html

Anthropologist Lesley Jo Weaver did research on this point of how stigma, diabetes, poverty, and self-care intersect in New Delhi, India. India is the nation with the 2nd largest number of type 2 (adult-onset) diabetics in the world, with rates highest in the working poor and middle class. Her work has highlighted that diabetes often co-occurs with depression for Indian women, especially the poorest. These are women who live by social norms that they are the ones meant to care first and most for others, not themselves. Diabetes at the best of times is a trying disease to manage. But for these women, such self-care is discouraged by the cultural ethos. Lesley Jo found, not surprisingly, women’s diabetes was really poorly controlled. But she also found that their depression rates are lower, even as physical risks are higher in these women, just because they leave their disease untreated. Complicated indeed.

 

Some References:

Mendenhall, E., & Weaver, L. J. (2014). Reorienting women’s health in low-and middle-income countries: the case of depression and Type 2 diabetes. Global health action7(1), 22803.

Mendenhall, E. (2016). Syndemic Suffering: Social Distress, Depression, and Diabetes Among Mexican Immigrant Wome. Routledge.

Weaver, L. J., Worthman, C. M., DeCaro, J. A., & Madhu, S. V. (2015). The signs of stress: Embodiments of biosocial stress among type 2 diabetic women in New Delhi, India. Social Science & Medicine131, 122-130.

Hopper, S. (1981). Diabetes as a stigmatized condition: the case of low-income clinic patients in the United States. Social Science & Medicine. Part B: Medical Anthropology15(1), 11-19.

*Browne, J. L., Ventura, A., Mosely, K., & Speight, J. (2014). ‘I’m not a druggie, I’m just a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes. BMJ open4(7), e005625.

 

 

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Alex Brewis

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