Allyson S. Hughes, PhD✉, Diabetes SIG Chair; and Elizabeth A. Beverly, PhD, Diabetes SIG Past-Chair
More than 34 million people in the U.S. have Type I or Type II Diabetes. Diabetes is a group of diseases characterized by high blood glucose levels resulting from the body's inability to produce and/or use insulin.1 Unfortunately, this disease may cause stigma as self-care in diabetes management may influence how individuals view the disease. Diabetes requires specific self-care recommendations, including following a healthy diet,2 weight management,3 engaging in regular physical activity,4,5 monitoring blood glucose levels,6,7 taking medication as prescribed,8 checking feet daily,9 and attending medical appointments.10,11 Diabetes stigma refers to negative feelings, such as exclusion, rejection, or blame, associated with having diabetes.12 The most common stigma, unrelated to type of diabetes, is the belief that people with diabetes are responsible for their own diabetes.12 Prior research has documented negative attributions by people who engage with people with diabetes including healthcare professionals, friends, and family members.13
Stigma has significant health implications. People with diabetes who perceive more stigma report higher levels of psychological distress, more depressive symptoms, less social support, and lower quality of life.14 Psychological distress, depressive symptoms, and lower quality of life are associated with fewer self-care behaviors,15,16 higher A1C values,16-20 and increased complications.21,22 Importantly, when people develop a negative relationship with their diabetes, they may change how they behave in public, try to hide the disease, have a lower sense of self-worth, and internalize stigma.23 Internalized stigma may lead to fewer self-care behaviors, difficulties with social interactions, and social isolation.23 Moreover, people who internalize stigma may struggle to form meaningful relationships and feel disconnected from friends and loved ones.23
Diabetes Language Recommendations
Upon identification that language in diabetes can be stigmatizing and harmful, the following organizations have published position statements: Diabetes Australia,24 International Diabetes Federation,25 American Diabetes Association,26 and American Association of Diabetes Educators.26 Recommendations include avoiding language that: 1) Implies that the person is disabled (e.g., diabetic child), 2) Equates a person to their condition (e.g., diabetic), 3) Uses unnecessary, negative overtones (e.g., suffering from diabetes), and 4) Uses judgmental language (e.g., noncompliant, poorly controlled diabetes). People with diabetes are diverse and what applies to one person will not apply to another. For this reason, it is impossible to predict what any single individual might prefer or not prefer. Therefore, ask the person you are interacting with what terminology they prefer.
The Power of Language
Language expresses “what disability is, how it affects or interacts with your personhood, and how other people see you.”27 Language impacts perceptions and behaviors.26 Words can intentionally or unintentionally inflict harm and/or stigma.26 For these reasons, the American Psychological Association advocates the use of person-first language.28 Person-first language acknowledges what a person has and not what a person is (e.g., ‘a person with diabetes’ versus ‘diabetic’). On the other hand, disability culture and disability studies scholars have challenged the rationale of person-first language use, instead promoting use of identity-first language.29
Identity-first language places the disability or chronic disease first recognizing that it is an integral part of them and their identity. Identity-first language is seen as empowering. It acknowledges that the disability is vital to who the person is whereas person-first language suggests that the disability is problematic. Using this logic, disability scholars argue that person-first language perpetuates stigma rather than puts a stop to it.30 A recent analysis of the use of person-first language in scholarly writing found that person-first language was used more frequently to refer to children with the most stigmatized disabilities (i.e., intellectual disability) compared to children with less stigmatized disabilities (e.g., deafness), children without disabilities, and adults with disabilities.30 To address this bias, experts recommend clinicians, researchers, and professional organizations refer to all persons, both with and without disabilities, using the same person-first language.30 Alternatively, experts recommend adopting identity-first language alongside person-first constructions to maintain human dignity.29 Inclusion of both identify-first and person-first language promotes inclusion and diversity as well as addressing the concerns raised by disability studies and disability culture.29 Importantly, clinicians should ask their patients about their preferred terminology. Similarly, in research settings, researchers should ask participants about their preferred terminology.
Want to Learn More?
Looking for more information? The Diabetes Online Community (DOC) has many places where people with diabetes converse including Twitter chats (#dsma – every Wednesday at 9PM EST), t1dchick’s Instagram, myglu.org, Beyond Type 1, The Juicebox Podcast, and highly popular blog Sixuntilme.
- Language impacts perceptions and behavior.
- Always ask the person you are interacting with what language they prefer.
- Play it safe and choose person-first language.
- Diabetes. 2020; https://www.diabetes.org/diabetes. Accessed February 29, 2020.
- Pi-Sunyer FX, Maggio CA, McCarron DA, et al. Multicenter randomized trial of a comprehensive prepared meal program in type 2 diabetes. Diabetes Care. 1999;22(2):191-197.
- Shantha GP, Kumar AA, Kahan S, Cheskin LJ. Association between glycosylated hemoglobin and intentional weight loss in overweight and obese patients with type 2 diabetes mellitus: a retrospective cohort study. Diabetes Educ. 2012;38(3):417-426.
- Maiorana A, O'Driscoll G, Goodman C, Taylor R, Green D. Combined aerobic and resistance exercise improves glycemic control and fitness in type 2 diabetes. Diabetes Res Clin Pract. 2002;56(2):115-123.
- Conn VS, Hafdahl AR, Mehr DR, Lemaster JW, Brown SA, Nielsen PJ. Metabolic effects of interventions to increase exercise in adults with type 2 diabetes. Diabetologia. 2007;50(5):913-921.
- Karter AJ, Ackerson LM, Darbinian JA, et al. Self-monitoring of blood glucose levels and glycemic control: the Northern California Kaiser Permanente Diabetes registry. Am J Med. 2001;111(1):1-9.
- Virdi N, Daskiran M, Nigam S, Kozma C, Raja P. The association of self-monitoring of blood glucose use with medication adherence and glycemic control in patients with type 2 diabetes initiating non-insulin treatment. Diabetes Technol Ther. 2012;14(9):790-798.
- Marinho FS, Moram CBM, Rodrigues PC, Leite NC, Salles GF, Cardoso CRL. Treatment Adherence and Its Associated Factors in Patients with Type 2 Diabetes: Results from the Rio de Janeiro Type 2 Diabetes Cohort Study. J Diabetes Res. 2018;2018:8970196.
- Lincoln NB, Radford KA, Game FL, Jeffcoate WJ. Education for secondary prevention of foot ulcers in people with diabetes: a randomised controlled trial. Diabetologia. 2008;51(11):1954-1961.
- Jacobson AM, Adler AG, Derby L, Anderson BJ, Wolfsdorf JI. Clinic attendance and glycemic control. Study of contrasting groups of patients with IDDM. Diabetes Care. 1991;14(7):599-601.
- Dyer PH, Lloyd CE, Lancashire RJ, Bain SC, Barnett AH. Factors associated with clinic non-attendance in adults with type 1 diabetes mellitus. Diabet Med. 1998;15(4):339-343.
- Liu NF, Brown AS, Younge MF, Guzman SJ, Close KL, Wood R. Stigma in People With Type 1 or Type 2 Diabetes. Clinical diabetes : a publication of the American Diabetes Association. 2017;35(1):27-34.
- Browne JL, Ventura A, Mosely K, Speight J. 'I call it the blame and shame disease': a qualitative study about perceptions of social stigma surrounding type 2 diabetes. BMJ Open. 2013;3(11):e003384.
- Gredig D, Bartelsen-Raemy A. Diabetes-related stigma affects the quality of life of people living with diabetes mellitus in Switzerland: implications for healthcare providers. Health Soc Care Community. 2017;25(5):1620-1633.
- Gonzalez JS, Delahanty LM, Safren SA, Meigs JB, Grant RW. Differentiating symptoms of depression from diabetes-specific distress: relationships with self-care in type 2 diabetes. Diabetologia. 2008;51(10):1822-1825.
- Fisher L, Hessler DM, Polonsky WH, Mullan J. When is diabetes distress clinically meaningful?: establishing cut points for the Diabetes Distress Scale. Diabetes Care. 2012;35(2):259-264.
- Fisher L, Glasgow RE, Strycker LA. The relationship between diabetes distress and clinical depression with glycemic control among patients with type 2 diabetes. Diabetes Care. 2010;33(5):1034-1036.
- Fisher L, Mullan JT, Arean P, Glasgow RE, Hessler D, Masharani U. Diabetes distress but not clinical depression or depressive symptoms is associated with glycemic control in both cross-sectional and longitudinal analyses. Diabetes Care. 2010;33(1):23-28.
- Reddy J, Wilhelm K, Campbell L. Putting PAID to diabetes-related distress: the potential utility of the problem areas in diabetes (PAID) scale in patients with diabetes. Psychosomatics. 2013;54(1):44-51.
- de Groot M, Jacobson AM, Samson JA, Welch G. Glycemic control and major depression in patients with type 1 and type 2 diabetes mellitus. Journal of Psychosomatic Research. 1999;46(5):425-435.
- Fisher EB, Thorpe CT, Devellis BM, Devellis RF. Healthy coping, negative emotions, and diabetes management: a systematic review and appraisal. Diabetes Educ. 2007;33(6):1080-1103; discussion 1104-1086.
- de Groot M, Anderson R, Freedland KE, Clouse RE, Lustman PJ. Association of depression and diabetes complications: a meta-analysis. Psychosom Med. 2001;63(4):619-630.
- Kato A, Fujimaki Y, Fujimori S, et al. A qualitative study on the impact of internalized stigma on type 2 diabetes self-management. Patient Educ Couns. 2016;99(7):1233-1239.
- Speight J, Conn J, Dunning T, Skinner TC, Diabetes A. Diabetes Australia position statement. A new language for diabetes: improving communications with and about people with diabetes. Diabetes Res Clin Pract. 2012;97(3):425-431.
- International Diabetes Federation Language Philosophy: Technical Document. In. Brussels, Belgium: International Diabetes Federation; 2014.
- Dickinson JK, Guzman SJ, Maryniuk MD, et al. The Use of Language in Diabetes Care and Education. Diabetes Educ. 2017;43(6):551-564.
- Thorpe JR. What Is Identity-First Language, & Should You Use It? Bustle. 2017. https://www.bustle.com/p/what-is-identity-first-language-should-you-use-it-74901.
- Disability. 2020; https://apastyle.apa.org/style-grammar-guidelines/bias-free-language/disability. Accessed April 24, 2020.
- Dunn DS, Andrews EE. Person-first and identity-first language: Developing psychologists' cultural competence using disability language. Am Psychol. 2015;70(3):255-264.
- Gernsbacher MA. Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma. J Child Psychol Psychiatry. 2017;58(7):859-861.