Around the world, we are increasingly recognising that the words and images we use to describe diabetes matter. Good communication has the power to provide accurate health information, present diabetes through a lens of public health and empathy that reduces stigma, and make a compelling case for diabetes policies and programmes.

The World Health Organization (WHO) is not immune from this scrutiny. On more than one occasion in recent years, WHO has released information about diabetes that has fallen short of the standards expected by people living with diabetes.

Through WHO’s Global Diabetes Compact, the organization is leading the charge for the meaningful engagement of people with lived experiences of diabetes. In addition to focus groups and informal consultations, WHO recently developed a survey methodology aimed at better understanding how people living with or affected by diabetes see themselves in the media. This includes how people would prefer to be portrayed, and the values and principles for WHO to communicate when explaining the importance of acting on diabetes.

The result of this intensive engagement is a new paper – A WHO key informant language survey of people with lived experiences of diabetes: media misconceptions, values-based messaging, stigma, framings and communication considerations – published on November 14 to mark World Diabetes Day.

The paper showcases the results from a survey of more than 900 people in 58 WHO Member States. It finds several themes to consider when communicating about diabetes, explained with their own words.

Respondents most commonly said the media needs to acknowledge that more than one type of diabetes exists. Type 1 diabetes, an autoimmune condition that often develops in childhood, is different from type 2 diabetes. For people with type 1 diabetes, this confusion can leave them feeling stigmatised and blamed for a condition that is not preventable. They felt shamed for “eating too much sugar” or being “lazy.” In some cases, this led to the use of stigmatising language towards people with type 2 diabetes—highlighting a need for empathy and understanding across the diabetes community.

Stigma was a widespread issue for respondents. This arose from limited understanding of the many factors outside of lifestyle that can contribute to type 2 diabetes. In many instances, media representations presented their condition as a joke.

Heartbreakingly, for some people with diabetes, attitudes among friends and family have been shaped to such an extent that they did not feel comfortable disclosing their condition.

The cost of living with diabetes, particularly in countries where there is no universal health coverage, leads to people fearing they will not be able to afford their insulin, and will die.

Hidden behind stigma and costs are the mental health consequences that diabetes can have. Respondents felt that they do not see the impact of living with a condition that requires 24/7 management discussed in the media.

Reading through the hundreds of responses provided, many people with diabetes felt unjustly shamed and blamed. Respondents wanted to feel understood and respected, and less like they have done this to themselves. Messages that are accurate, supportive and use values-based language of urgency, preventing suffering and taking rights-based approaches, are particularly appreciated.

This study had limitations: respondents living with type 1 diabetes and women were oversampled relative to population size; a response bias arose with many respondents already engaged with the WHO in some way; and the survey was only offered in English and Chinese.

Despite this, these timely findings reflect what many global advocates have long explained:  language matters for diabetes.

Bringing together the ideas of hundreds of people, the paper provides insights to inform how WHO and other organizations can communicate about diabetes and related policies, in an accurate, impactful and empathetic way. By learning from lived experience, we can improve diabetes communication.

The title of the Master Class program, “Working with, and for patients”, was underway. Last March, I was invited by Servier to attend the diabetes program in my capacity as one of the members of the IDF Blue Circle Voices network. The first effort of the morning was directed to assist an upcoming diabetes awareness program which needed the input of people with type 2 diabetes. The second was for the attendees, most of whom lived with diabetes,  to interact with about 50 diabetologists and endocrinologists from across the world. The goal was for all involved to share challenges and experiences about doctor-patient communication. The objective? To improve relationships between healthcare providers and people with diabetes. Some of the insights included doctors admitting feeling burned out from heavy work loads while people with diabetes felt unheard and judged.

Improving practitioner-patient communication has become a priority in modern healthcare systems today mostly because it improves diabetes clinical outcomes. Previous studies suggest that doctors who score higher on empathy and compassion in patient communication, also score higher on treatment outcomes.

Doctors and people with diabetes were asked to express their concerns regarding the barriers to communication that negatively affect the doctor-patient relationship, and ultimately treatment outcomes.

Insights

• People with diabetes mostly centred on the need for doctors to give them undivided attention, to involve them in decisions about their treatment and share information critical for self-management.
• People with diabetes complained that doctors often take a judgemental approach and do little to help motivate.
• Doctors complained that people with diabetes often fail to prioritise their health at the expense of work or relationships, lack motivation and often find it difficult to follow instructions, like recommended diet, medication and lifestyle.
• Physicians reported high levels of distress and burnout in their work which often compromises their ability to give their patients adequate time and attention.

Possible solutions

• To improve communication with people with diabetes, the doctors committed to active listening, asking open ended questions, asking for the patient’s perspective, acknowledging the achievements made by people with diabetes and empowering them with information on their condition among other patient-centric methods.
• People with diabetes agreed to write notes during consultations and give as much information as honestly as possible to doctors, in all interactions. They also pledged a commitment to follow instructions and adhere to the recommended medication and diet. It was suggested that people with diabetes should be able, if they wish, to record consultation conversations with their doctors for future reference.

By incorporating the voice of people with diabetes, and by taking into consideration experiences, thoughts and recommendations, the program was unique and a great success. Convening the doctor-patient program set up an important commitment from the professionals. Participating doctors were keen to incorporate the voices of the people with diabetes they treat into their practices going forward.

As a person living with type 2 diabetes and a member of the Blue Circle Voices Network, participating at this forum was a valuable experience as it afforded me the opportunity to give my perspective of what it is like to live with the condition on a daily basis. The lessons learnt at this conference will be beneficial to me as an individual and also to the communities that I work with in the fight against diabetes. It is my hope that there will be more opportunities for people with diabetes to be heard at such important platforms going forward.

The Diabetes Master Class was organised by Servier International and held in Paris, France.

Experts say words matter when speaking directly to people with diabetes. New guidance from two sources, Language Matters: Language and Diabetes (NHS, June 11, 2018) and the American Association of Diabetes Educators (AADE) and the American Diabetes Association (ADA) in The Use of Language in Diabetes Care and Education (October 17, 2017) recommend that healthcare providers should be attentive and respectful of words when discussing diabetes treatment and test results with patients in a way that encourages and motivates. The objective of each guidance is an effort to reduce any negativity in the language used by clinicians that might lead to unintentional bias or express negativity which can adversely affect the psychosocial well-being of the individual. According to an important paper from 2017, “For people with diabetes, language has an impact on motivation, behaviours, and outcomes”.

The language of diabetes and the stigma associated with words like control, non-compliant and diabetic (used as both a noun and an adjective) don’t only apply to the healthcare setting; they are often heard or seen in the home, office and more traditional or social media platforms. In light of this global discussion, Diabetes Voice reached out to two individuals to express their views on the subject. Betsy Rodríguez, who lives with diabetes, is a nurse, diabetes educator, national and international speaker on diabetes-related topics, bicultural specialist in health communication strategies, and author. She presently serves as a Senior Public Health Advisor in the Translation Health Education and Evaluation Branch in the Division of Diabetes Translation (DDT) at the Centers for Disease Control and Prevention (CDC). Paul Sandells was diagnosed with type 1 diabetes in 1984. He is a vlogger and lives in the United Kingdom. Each of our contributors represent perspectives that illuminate the impact of language in diabetes.

Why does language matter when we talk about diabetes?

Betsy Rodríguez

Have you ever been on the wrong side of a conversation at a clinic or a hospital, where the language used to describe your condition sounded critical and made you feel judged and even, depersonalized?  I live with diabetes and I have been called a diabetic patient many times! At some point, you start asking yourself, since when did my full identity become diabetic patient instead of a person who has diabetes or a person living with diabetes.

There are many examples of this conundrum. Perhaps while searching online, you come across a website, talking about diabetic feet so now I am realizing that my feet are diabetic too! On the Internet, you are more likely to skip to the next website in your search results.  However, in a clinic setting, you would likely: a) seek out another healthcare team or doctor or b) decide to stick with them and work to increase their awareness, helping them understand that when it comes to diabetes, language matters!

Words are powerful weapons that healthcare teams can utilize to empower people living with diabetes or demotivate them.

As a person with diabetes, I am not defined by my diagnosis. Language used in the community and in the healthcare system has been a battle that many people have been fighting for years. This is not only happening in the diabetes community; one example is the work of parents of children with Down syndrome and the Global Down Syndrome Foundation and their campaign Words Can Hurt. For people with Down syndrome and their families, the history of labels is not a pleasant one. People with Down syndrome were associated with words like idiot, moron, and imbecile by society and the medical profession. Today, these labels are considered politically incorrect, hurtful and dehumanizing.

In the diabetes community, the topic of why language matters for healthcare advisors, professionals and people with diabetes is connected to the nature of language in diabetes care, in the media, and the stigma associated with language when diabetes is the topic.  In 2016, Diabetes Australia launched a position statement: A new language for diabetes: Improving communications with and about people with diabetes. (Position Statement: A new language for diabetes, 2011) The aim of Australia’s position statement is to encourage greater awareness of the language surrounding diabetes, and to identify potential improvements. Diabetes Australia believes that optimal communication increases motivation, health and the well-being of people with diabetes.  Furthermore, careless or negative language can be demotivating, is often inaccurate, and can be harmful. In 2017, The Use of Language in Diabetes Care and Education was published. (Jane K. Dickinson, 2017) This publication opened many opportunities for the American Association of Diabetes Educators (AADE) to increase awareness about the way healthcare professionals talk to and about people with diabetes; how language plays an important role in engagement, conceptualization of diabetes and its management, treatment outcomes, and psychosocial wellbeing. A taskforce consisting of representatives from AADE and the American Diabetes Association convened to develop these guidelines using four guiding principles:

1. Diabetes is a complex and challenging disease involving many factors and variables.
2. Every member of the healthcare team can serve people with diabetes more effectively through a respectful, inclusive, and person-centered approach.
3. Stigma that has historically been attached to a diagnosis of diabetes can contribute to stress and feeling of shame and judgement.
4. Person-first, strengths-based, empowering language can improve communication and enhance motivation, health and well-being of people with diabetes.

As a person living with diabetes for more than 30 years, I can say that living with diabetes can be overwhelming at times. Like all chronic diseases, it affects every aspect of our daily routine. Diabetes management is not as simple as just taking a pill. It requires timing of meals, checking blood sugar and being vigilant about exercise, all in accordance with a personalized management plan developed in consultation with healthcare professionals.

The time has come to reflect on the language of diabetes and share insights with others. Messages of strength and hope will signify progress toward the goals of eradicating stigma and considering people first (Jane K. Dickinson, 2017).

Betsy Rodríguez, RN, MSN, DE is a nurse, diabetes educator, national and international speaker on diabetes-related topics, bicultural specialist in health communication strategies, and author, presently serves as a Senior Public Health Advisor in the Translation Health Education and Evaluation Branch in the Division of Diabetes Translation (DDT) at the Centers for Disease Control and Prevention (CDC). At CDC, Mrs. Rodriguez provides technical assistance and support to state grantees, national diabetes-related professional organizations, such as the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE), as well as community-based organizations. At the international level, Mrs. Rodriguez provides technical assistance and support to the International Diabetes Federation, IDF SACA Region and is a member of the IDF Blue Circle Voices of Diabetes.

I am not offended by the word diabetic

Paul Sandells

While I support Language Matters and recognise that it is a force for the good, on the whole, it doesn’t really matter to somebody like me, a seasoned diabetic. How I choose to refer to my condition and my management of it is my own business. I’ve had type 1 diabetes (T1D) for almost 34 years. I’ve always considered myself to be a diabetic. It says so on my social media profiles and on the tattoo on my arm. I’m not offended by the word “diabetic”. I understand it doesn’t define me but it is a significant part of my life.

I believe the language used in a clinic environment is more significant but not to a very strict level. I want to know my HbA_1c isn’t good enough and if my healthcare professional (HCP) describes it as “poor” or “too high” then that is fine with me. I can take that information away and work on it, rather than sulk because I got a bad mark in class. I want my clinic team to be pro-active in helping me and others with diabetes, rather than walking on egg shells because of the terminology they might use.

There is a fine line between offering constructive encouragement, even criticism and being downright offensive, though. I never want to be told that I’m a “bad diabetic” or even a “bad person with diabetes”. The latter actually sounds worse than the former to me! Neither do I want to be referred to as “non-compliant”. Those terms, amongst others, are very offensive when used by a HCP. In fact, unless used jokingly between friends, they are offensive if used by anybody. I realise that we are all different. We all have our line in the sand when it comes to what offends us and what doesn’t. Being offended and possibly extremely upset, following a clinic appointment, can never be a good thing when it comes to long term management of our diabetes.

We all respond differently to how a HCP approaches us, their body language, how they engage and how interested they are in our condition. If language does matter, then so do all those things. I am much more likely to be upset or offended if my HCP doesn’t look at me when I’m talking, isn’t open to my questions and doesn’t show a genuine interest in my care. I believe the vast majority do those things. I don’t want to be judged on my condition negatively because I live with T1D, my T1D, every single day. I’m not the same as the patient you saw earlier, with an HbA_1c of 6%. Don’t compare me to that person or any other diabetic. Comparison to “perfect” diabetics is what offends me far more than being labelled a diabetic and, to me, that’s what HCPs should be focusing on during appointments rather than worrying about how to tell me that my HbA_1c for the last 90 days is terrible. Work with me to manage my diabetes in the best possible way, based upon how I live and I’ll be a happy patient. Language matters to a point but my health matters far more than the words you use.

Paul Sandells is a type 1 diabetes vlogger from the United Kingdom. Diagnosed in 1984, he is a husband and father of two. @DiabeticDadUK