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Type 2 diabetes report: Stigma, support, and living with type 2

Type 2 diabetes comes with a stigma that can prevent people living with the condition from seeking help. Remission from type 2 diabetes is a goal for more than 9 in 10 people, but most feel unsupported from the point of diagnosis. This report investigates what we—the media, companies, charities, and the public at large—can do to help.
Napala Pratini
6/14/2022
min read
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Quick summary

  • 69% of people said more positivity in the media would help reduce the stigma associated with type 2 diabetes.
  • 1 in 5 people avoid eating in public due to the stigma associated with type 2 diabetes
  • 23% of people felt they didn’t have any support when diagnosed
  • 46% of people said they felt fear when diagnosed

Summary

Type 2 diabetes is one of the most significant health challenges facing modern society. But, in all the talk about how serious the disease is, how much money it costs, and how much burden it puts on our healthcare systems, the narrative often strays from the most important factor—the experience of people living with type 2 diabetes. The media, healthcare professionals, and the public at large (mostly) inadvertently stigmatise and marginalise living with the condition, leaving those with type 2 diabetes feeling unsupported and shamed.

This Diabetes Week, we at Habitual wanted to shine a light on what it really means to manage type 2 diabetes day in and day out, from the practical to the emotional, as well as to investigate what we, as societies, can do to help the situation. To do this, we sought input from our community of people living with type 2 diabetes, and we’ve compiled some of the most interesting results here. 

Methodology

For data collected from people with type 2 diabetes, 575 survey responses were collected online between 11th-18th May, 2022. For data from the general public, the research was carried out online between 6th June 2022 and 8th June 2022 and the sample comprised 2,003 UK adults.

Diagnosis: An emotional time where community is crucial

People want to talk about type 2 diabetes—69% people tell more than one close contact when they were diagnosed. More than 1 in 4 told 3 or more other people about it!

Further, a type 2 diabetes diagnosis is an emotional time. Only 3% of people said they felt no emotions when they were diagnosed - 24% of people felt 3 or more emotions, most commonly sadness (50% of people) and fear (46% of people).

Support: We have a long way to go

Overall, only 3 in 10 respondents felt they’d received enough advice since being diagnosed with type 2 diabetes. People look to their healthcare professionals for support— - 36% of people said their nurse(s) have been the most supportive in the type 2 diabetes journey, above partners and families. But patients are more often than not left feeling unsupported. 23% of people said they didn’t get support from anyone at all, and a further 20% said they relied on content on the internet—a typically solo journey. 

When asked to describe the support they received when diagnosed, 23% of people’s answers included “none”, “very little”, “not enough”, “not much”, or “nothing”. Support was described by some as “patronising”, “poor”, “terrible”, and “disappointing”.

23% of people didn't get any support at all.

The support needs amongst those with type 2 diabetes are wide ranging. When asked to choose between 8 types of support, 70% of participants choose 4 or more ways in which they’d like to be supported, with more advice on what to eat, advice on reversing type 2 diabetes, and access to weight loss prescriptions.

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Remission: A goal for most

Remission from type 2 diabetes, although a relatively new concept, is well-known amongst people with type 2 diabetes. 75% of respondents reported knowing that remission was possible, and it was one of the top things that people wanted support with on their type 2 diabetes journey.

More than 90% of people with type 2 diabetes are interested in achieving remission.

The assumption is often made that people with type 2 diabetes are too unmotivated to make the necessary changes to better manage or reverse the condition, but the data tells us otherwise. When asked whether they were interested in type 2 diabetes remission for themselves, only 0.7% of people said “No, I don't want to have to make changes to my life to achieve remission”. A further 7% said they did not think they would be able to achieve remission. The remaining 92+% of respondents were interested in remission, the largest portion of them saying they were interested but did not know how to achieve it—taking us back to the point around lacking support.

Stigma: Felt by the majority, and the media is to blame

Nearly 6 in 10 people with type 2 diabetes believe there is a stigma around the disease, with the main cause of that stigma being how it's portrayed in the media. The second most common reason for the stigma was personal… “because of how I feel about having the diagnosis”. 

50% of people avoided telling others about attempts to change their health, such as trying a new diet, due to this stigma—when in fact the research shows that having accountability and support from others can be a key factor in achieving and maintaining health goals. 

1 in 5 people with type 2 diabetes avoid eating in public due to the stigma.

Nearly 70% of people said that more positivity in the media would reduce the stigma of type 2 diabetes—and 55% said that more opportunities for people to share their stories (with each other, and with those without the disease) could also help.

Public opinion: Supportive, but not sympathetic

In a separate survey of the general public about their opinions on type 2 diabetes, we found that the majority (52%) of people believed those with type 2 diabetes should get more support from the NHS, and only 13% didn't believe more support should be offered (the remaining 35% did not know).

The public also seems to be better-educated than we typically assume about type 2 diabetes. When presented with a list of common misconceptions about type 2 diabetes (such as "it's only an issue for older people" and "people with type 2 diabetes should only eat 'diabetic' foods"), 47% agreed with none of the options presented. Only 3% believe that diabetes is not that serious. The most selected misconception was that type 2 diabetes is caused by eating too much sugar, which—to be fair—could very well be a contributing factor to the development of type 2 diabetes (but, of course, isn't the only one).

Only 3% of the public believe that type 2 diabetes is not serious.

When it comes to sympathy, however, the public ranks type 2 diabetes very low when compared to other diseases. When asked to pick from a list of 13 which they felt the most sympathy for, type 2 diabetes came in 11th, ahead of only lupus and syphilis.

In conclusion

Type 2 diabetes is difficult physically, emotionally, and at every step of the journey including diagnosis, navigating life with type 2 diabetes, and charting a path to remission. Despite the fact that type 2 diabetes impacts 1 in 10 people in the UK, most people with the disease feel stigmatised, unsupported, and often fearful and sad as a result of a diagnosis.

Even in the face of extreme difficulty, people with type 2 diabetes are fighting for better health and aiming for remission. Here are some of our thoughts on what we can all do to better support this challenging and admirable goal:

  • The media: The majority of people with type 2 diabetes report that the stigma they feel associated with the disease is a result of how it's portrayed in the media, and the general public is relatively unsympathetic to those with the disease. We would love to see a world in which the narrative changes from condemning people with type 2 diabetes to helping them achieve better health—and celebrating them when they do.
  • Companies & charities: Most people with type 2 diabetes feel absolutely unsupported, and companies and charities have the potential to play an important role in offering some types of support, such as free content, courses, and even plans or programmes to better manage blood sugars or even reverse type 2 diabetes. We know that it's just a drop in the ocean, but that is exactly why we at Habitual write our Journal and weekly email newsletter with free content focused on type 2 diabetes.
  • Friends & family of those with type 2 diabetes: If our research has showed us anything, it's that type 2 diabetes is an incredibly personal journey—but we do know that most people with a diagnosis receive support from those close to them. If someone you love suffers from type 2 diabetes, it's important to ask them if and how you can help, rather than assuming what kind of support they need... it's just another way we can work to break down the stigma of diabetes together.
  • Doctors & healthcare professionals: We hear time and again that the only advice patients receive when being diagnosed is to take a pill—or best case, to lose weight and exercise more. Now more than ever, it's important that healthcare professionals educate themselves about the possibility of type 2 diabetes remission and how patients can reach it, as well as understand where to point patients looking for more information. We know that making appointments longer probably isn't a realistic possibility, but having useful resources at your fingertips can change the life of a patient looking for help.

We've also launched a new campaign to celebrate the #FiveMillionFaces of type 2 diabetes in the UK. Join the campaign here and let's break down the stigma and beat type 2 diabetes—together!

References

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