The silence can create a vicious circle, in which the negative emotions and lack of social support can hamper their diabetes management. But unlike what they expect, many of them are met with support and recognition, when they open up.

Younger adults (aged 20 – 45) with Type 2 diabetes “just want to be normal” and fear being looked down upon if they talk about their diagnosis. However, when coping with Type 2 diabetes on an everyday basis, it is vital to talk to other people. In fact, many of them receive positive reactions like support and recognition, when they open up to friends and colleagues.

This is the conclusion of a qualitative study published in the October 2020 edition of The Open Diabetes Journal, in which Danish researchers spoke to 10 women and 5 men aged 20 – 45 who live with Type 2 diabetes.

The study was conducted by Maja Hykkelbjerg Nielsen, MSc Public Health as part of the larger ‘2EARLY’ study, which is led by a former DDA member, Anne Bo, PhD, postdoc, The Department of Public Health, Aarhus University with Professor Helle Terkildsen Maindal as supervisor.

The ‘2EARLY’ project, which has so far completed four studies, aims to identify the special conditions and needs of young adults with Type 2 diabetes, thereby paving the way for future measures (For more information, see Anne Bo profile).

“In this interview study, we investigated how young adults with Type 2 diabetes activate and use their networks in the context of coping with Type 2 diabetes,” explains Anne Bo.

“One young woman described how she got angry and upset if her friends, in an effort to be caring, served special food when they got together, because she felt she was being picked out as ‘abnormal’.”

The researchers also have an important message for the young adults who live with Type 2 diabetes: The outside world is probably not as judgmental as they fear. “Several of the interviewees were surprised by the help and support they encountered when they talked about their diagnosis. One of them described how it simply made things ‘ten times easier, because I don’t have to explain or apologise’.

“But the study also reveals the huge necessity of breaking down prejudices and supporting young adults in dealing with their condition in social contexts,” Anne Bo emphasises.

Speak out or keep it secret
The study examined the implications of “disclosure” and “concealment”: in other words, the importance of sharing or hiding information about one’s diagnosis.

The interviewees were asked, for example, about their feelings vis-à-vis discussing their diagnosis at the outset of the course of the illness, and about their experience of talking about their diagnosis with different people in their social network.

“…Then there’s the issue that you have a bad conscience and, if people know just a bit about it, they may think that it’s because you’re overweight and stuff like that”

Initially, the majority of the interviewees told only the people closest to them about their diagnosis and, after sharing their anxiety and confusion, were met with great emotional support. One of the women in the study said: “I cried down the phone when I called him… And then I simply told him what the doctor had told me: that I had diabetes. And my husband’s reaction was, ‘I’m so sorry. But we’ll tackle it together.’ And that was probably exactly what I needed to know.”

People without a partner felt far more isolated with all the issues running around in their heads.

Virtually all of them expressed how difficult it was to have to tell their loved ones because they were afraid of upsetting and frightening them. It was especially difficult for those with children.

Stigma and shame make it difficult to be open about one’s diagnosis
Many of the interviewees found it difficult to be open about their diagnosis to acquaintances less close to them. They assumed that other people would feel guilty about their situation. This is how one of them put it: “I am open to my family and friends and those people I rely on. But I am probably extremely closed when it comes to people I don’t know… Then there’s the issue that people who know just a bit about it may think that it’s because you’re overweight and stuff like that…[that you got the disease].”

Several described how they are met with silent condemnation on the part of family members and colleagues, and almost all of them felt that the media help create a negative stereotype of Type 2 diabetes.

“Fortunately, right now we are seeing a showdown among professionals and in several media, where there has been a much greater focus on the genetic, upbringing-related, social and structural causes of Type 2 diabetes. I hope this insight can help break down prejudices so that young adults with Type 2 diabetes can speak more openly and constructively to their circle of friends and health professionals,” says Anne Bo.

“This indicates a really important paradox. It is in the situations, where young adults with Type 2 diabetes really need social support, that they are most reluctant to talk about their problems. In that context, the healthcare system must be ready to help them out of the vicious circle”

Surprisingly positive experiences when talking about their condition
Most became gradually more open about their Type 2 diabetes as they themselves accepted it, and several described positive reactions. In particular, those who felt they succeeded in reorganising their health habits found it easier to share their diagnosis with the people around them.  “They had a positive narrative to share, and they were met with recognition and praise. It also became easier for them when they had more knowledge about the condition and a good understanding of their own needs. Then they could talk about it more easily to others, which led to more positive and supportive reactions,” says Anne Bo.

That is why she believes the health service should equip young adults with Type 2 diabetes and the people closest to them with specific information and emotional and practical management tools.

We just want to be treated as ‘normal’ and not be a burden on other people
Despite positive reactions, some of the interviewees found it disconcerting that other people knew about their Type 2 diabetes. One young woman said she “felt abnormal” and got angry if her friends, in an effort to be caring, served special food when they got together. Another explained: “I feel I’m being a pain, if I ask them to take my diabetes into account.” Meanwhile, others regarded the “special treatment” as care, and “simply an advantage” when, for example, their friends served wholemeal rolls at work, instead of cake.

“This is a very classic dilemma that can really hamper efforts to change habits. Perhaps particularly in young adults. They want to be part of the community and not stand out. This underlines the need to include family, friends and the local community in our health promotion interventions, so that everyone is on board,” says Anne Bo. 

Stand alone when things are at rock bottom
Whereas it seemed easier to tell others about the diagnosis when things were going well, many explained how, when they thought they were eating ‘wrongly’ and not achieving their goals, they did not feel like discussing it with other people, because they felt guilty and ashamed. “This indicates a really important paradox. In the situations, where young adults with Type 2 diabetes really need social support, they are actually most reluctant to talk about their problems. In that context, the healthcare system must be ready to help them escape the vicious circle,” concludes Anne Bo.

Maja Hykkelbjerg Nielsen, MSc Public Health, as part of the larger ‘2EARLY’ study, which is led by a former DDA member, Anne Bo, PhD, postdoc, The Department of Public Health, Aarhus University.

Maja Hykkelbjerg Nielsen

Anne Bo

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Read the article about the research here in The Open Diabetes Journal: To Tell or Not to Tell: Disclosure and Self-Management among Adults with Early-Onset Type 2 Diabetes: A Qualitative Study 2020 Oct;10:11-19. https://doi.org/10.2174/1876524602010010011