Pregnancy is challenging enough on its own – but a diabetes diagnosis can add stigma and shame to the equation for mothers made to feel that they are putting their baby at risk.
Gestational diabetes is a “mild” type of diabetes that can arise during pregnancy. If left untreated, gestational diabetes increases the chances of delivery complications – high birthweight, preterm delivery and emergency C-section – and elevates the risk of pre-eclampsia for the mother. But how does being diagnosed with a highly stigmatised condition affect the women?
New research, published in July in Diabetes Research and Clinical Practice, illustrates how women in Denmark perceive their own gestational diabetes diagnosis – with potential implications for how healthcare providers should treat them.
“How do we communicate all these risks and yet balance the emotional impact it will have on the women?” asks co-author Karoline Kragelund Nielsen, Senior Researcher at Steno Diabetes Center Copenhagen.
Insulin resistance and social stigma
About 6% of pregnant women in Denmark have gestational diabetes, according to Peter Damm, another co-author and Professor of Obstetrics at the University of Copenhagen.
During pregnancy, certain hormones produced by the placenta make the cells in the body less responsive to insulin – “meaning that you have to produce more insulin to keep the blood glucose levels in the normal range,” Damm explains. “Most women can do this by producing more insulin, but some cannot.”
Gestational diabetes is primarily treated by changing diet, which is enough to get blood glucose levels under control for about 75% of his patients, Damm says. That can contribute to the perception of gestational diabetes as a “lifestyle disease”, which can feed into victim-blaming narratives that paint the mother as being “at fault” for endangering her baby’s health and her own.
This is far from the truth, the researchers say. Gestational diabetes has a strong genetic component – women with a family history of type 1 or type 2 diabetes are more likely to become insulin resistant during pregnancy. And factors beyond expectant mothers’ control – including access to healthy foods and the free time and spaces to exercise – can be root causes of gestational diabetes.
Interviewing mothers-to-be with gestational diabetes
Lead author Emma Davidsen, a PhD student at Steno Diabetes Center Copenhagen and the Aarhus University Department of Public Health, set out to ask women with gestational diabetes how they perceive their diagnosis and how they have been treated since receiving it.
After recruiting prospective participants from two hospitals, Davidsen interviewed 20 women with gestational diabetes in 2022. Their conversations were wide-ranging, but Davidsen was particularly interested in exploring a handful of key topics: their understanding and perceptions of diabetes in general as well as gestational diabetes specifically; the degree to which they blamed themselves for their diagnosis; and how their diagnosis affected their interactions with others, from family and friends to healthcare providers.
Most of the women referred to – or themselves held – the perception of gestational diabetes as a “lifestyle disease”, according to the authors. They believed that gestational diabetes resulted in part from a family history of diabetes, “but also overweight as well as unhealthy eating and physical activity habits”.
“Many of these women reported that they felt guilty or had a narrative about what caused their diabetes during pregnancy that was more related to what they could have done differently or not being in control of their bodies and pregnancies,” Davidsen says.
A clash of prejudice and self-perception
Several participants wrestled with the conflict between their preconceived notions of who might develop gestational diabetes and their own identity and self-perception, Davidsen observed. “You would perhaps usually think that someone [with gestational diabetes] is a person who eats a lot of sugar or someone … who is obese or has an unhealthy lifestyle,” one participant said in her interview.
“I felt like I was being put in the ‘pizza box’ ... like I was labelled as someone who would just lie on the couch all day, drink Coca-Cola and eat pizza, which is not at all how I perceive myself. So, I felt like that was quite unfair,” another participant offered.
Some participants responded to this cognitive dissonance by expanding their idea of the “typical” woman with gestational diabetes. “Once diagnosed themselves, they altered their preconceived notions and thought, ‘Well, if I can get it, then anyone can get it,’” Davidsen says.
Others mentally distanced themselves from other people with diabetes. “Some said that their diagnosis might have been a mistake or in other ways tried to say that they differed from people with gestational diabetes and did not identify with the diagnosis,” Davidsen says.
One participant even said she would decline tests for gestational diabetes in any future pregnancies. “In the next pregnancy I will probably spare myself from the implications of having [gestational diabetes],” she admitted. “It’s got to do with being put in this [“pizza”] box again.”
Secret-keeping and judgemental doctors
Some women reported being reluctant to disclose their diagnosis to people outside their inner circle because of anticipated stigma. None of the participants described any outright discrimination or blaming behaviour from family members or friends, but several women reported checking their blood glucose and giving themselves insulin injections in secret.
“I wouldn’t want a life where I would have to inject myself in public places, because, I mean, what would other people think? Is it because you can’t control your weight or … yeah, I would honestly consider it a failure … because it would be a sign that I didn’t do a good enough job,” one participant said.
On the whole, the women reported that most of their healthcare providers were “empathetic and understanding”. However, some of the interviewees recounted interactions with healthcare providers, including doctors and midwives, that left them feeling judged. One woman said that a midwife overemphasised the need to be a “good role model” to her children, and another said that a doctor seemed surprised that she was not overweight despite her gestational diabetes diagnosis.
The importance of education – for both the women and healthcare providers
But what made a diagnosis of gestational diabetes easier for the women to bear? Information, the interviewees said.
“Specifically, being told that gestational diabetes was also due to the hormones produced by the placenta was highlighted as knowledge that relieved the informants of guilt and self-blame,” Davidsen and colleagues wrote in the article. “High blood glucose levels and the need for insulin were not to the same extent perceived as personal failures.”
The participants emphasised how meaningful it would be to receive this background information on gestational diabetes as soon as they were informed of their diagnosis. Many of the women were informed of their gestational diabetes through an online citizen portal and were distressed for several days before seeing healthcare personnel who could provide answers and relieve concerns.
Damm says more research will be necessary to understand how prevalent these experiences are for women with gestational diabetes in Denmark. Davidsen hopes to connect with a more diverse range of women in future studies – 19 of the 20 participants she interviewed identified as ethnically Danish or half-Danish.
But this window into the experience of women with gestational diabetes has already proven impactful to healthcare providers. After conducting the study, Davidsen has shared the women’s insights during talks with clinicians – nurses, midwives and doctors who treat women with gestational diabetes. “I think they really listened,” Damm says. “It was definitely something they evaluated as valuable.”