L’obscurité. Comme si mon avenir s’était brisé en morceaux. J’avais peur qu’aucun des meilleurs employeurs ne m’embauche. J’étais perdue et n’avais personne à qui parler. C’est ce que j’ai ressenti lorsque l’on m’a diagnostiqué un diabète de type 2 en 2010, à l’âge de 23 ans.

Je vis avec l’obésité depuis ma jeunesse. J’ai grandi en Indonésie et il n’y avait pas de cantines scolaires : soit on apportait ses repas, soit on les achetait à la cafétéria. On y trouvait beaucoup d’aliments transformés, de restauration rapide, de malbouffe, de boissons sucrées et de boissons gazeuses, et aucune consigne spécifique n’était donnée aux vendeurs de la cafétéria quant à ce qu’ils devraient vendre. Il en allait de même avec les vendeurs ambulants chez qui nous achetions souvent à manger, mes amis et moi, après l’école. Je n’avais aucune conscience de l’impact potentiel des aliments transformés sur la santé pendant ma scolarité.

Mon père vivait avec le diabète, mais je ne connaissais pas la maladie, ni les signes à surveiller. Un jour, j’ai dû passer une visite médicale dans le cadre d’un processus de recrutement, qui a révélé une glycémie très élevée. En conséquence, mon recrutement a été reporté et on m’a vivement recommandé de consulter un médecin. J’aurais aimé en savoir davantage plus tôt sur ma maladie et sur la manière dont elle aurait pu être prévenue.

« Pourquoi moi ? » Je me suis posé la question. J’avais honte que les gens puissent penser que j’avais du diabète parce que « j’étais obèse », « je mangeais trop », « je buvais trop de boissons sucrées » ou « je n’étais pas assez croyante ». Il y a des gens plus corpulents que moi, qui sont exposés aux mêmes facteurs de risque. La différence c’est qu’ils n’ont pas développé de diabète aussi tôt que moi, voire jamais. Pourquoi ?

Mon médecin m’a dit que la prise en charge du diabète implique de gérer la maladie pour en prévenir les complications, des complications que j’ai fini par développer sous la forme d’une dépression clinique. Elle joue également un rôle important dans la rémission du lupus, avec lequel je vis également. Gérer le diabète, c’est consulter un nutritionniste qui me donne des conseils pour préparer mes repas et avoir une alimentation équilibrée - des informations détaillées que je n’avais pas reçues à l’école. Simple en théorie, mais la pratique est une autre paire de manches.

La préparation des repas peut prendre beaucoup de temps et d’énergie. Malheureusement, les choix alimentaires « mauvais pour la santé » sont moins chers, plus rapides et plus variés. Ils donnent aussi souvent une plus grande sensation de satiété que les aliments plus sains. J’évalue ces différents choix, grâce à la prise de conscience que j’ai développée avec l’aide de mon nutritionniste, mais beaucoup de gens n’ont pas accès à ces informations.

Knowledge is power. I need to know what I'm going through. After my diagnosis, I began my research on diabetes. This process wasn’t easy; I remember attending a seminar on diabetes where I was the only young person in the room, which made me feel shame, denial and isolated in my experience. Fortunately, I soon joined a delegation representing Indonesia at Young Leader Diabetes. This allowed me to meet other young people living with diabetes, and learn about diabetes prevention and care.

Inspired by the Young Leader Diabetes, we created a community called Persadia Muda (Young Indonesia Diabetes Association) for young people living with diabetes between the ages of 17 – 45, because the challenges we face often differ from those of children or the elderly. Persadia Muda is a place where we can share support, information, and learn from others' experiences.

Through this community, we can spread much needed awareness on diabetes and associated risk factors, to help prevent the onset or complications of diabetes for others in Indonesia. A member with lived experience of gestation diabetes named Mpit, age 28, told me that she was happy to gain support and learn from others about pregnancy and diabetes. She should have received this education from her healthcare provider, but this was unfortunately not the case as either the healthcare provider had insufficient knowledge, or they were not obliged to educate patients in their facility. After giving birth, her blood glucose level normalized, meaning she could cease diabetes medication. However, through our community she learned of her increased risk, after experiencing gestational diabetes, of developing type 2 diabetes. This to her adopting necessary precautions and health-promoting activities to prevent its onset.

Some of Persadia Muda’s members live in rural areas. One member living with type 1 diabetes named Jess, age 29, shared challenges she faces to prevent diabetes complications. She lives in a town in West Java Province, where there are limited specialized doctors including no endocrinologist, meaning she needed to travel to receive care. She mentioned that many healthcare providers do not have adequate information on diabetes. In terms of managing diabetes and monitoring her blood glucose, she needs a glucometer device and its test strip. Unfortunately, this is not covered by the government health social security. She is lucky enough to be able to afford it, but there are others who can’t, meaning they are unable to monitor their blood glucose level to measure the effectiveness of their therapy.

There are significant misconceptions about diabetes in Indonesia. When people learn that I am living with diabetes, some ask me whether I have "wet" or "dry" diabetes, which refers to two types of wounds – either open or closed – that can occur often on the feet as a result of the condition. Some people might offer all kinds of traditional medicine claimed as the cure for diabetes. I also often hear people who make comments such as "Oh, you have diabetes. That must be because you eat too many sweet foods" or "You are too fat that's why you have it" or "You must be too lazy to move".

Living with diabetes and witnessing these misconceptions has taught me about the importance of educating the public on risk factors, such as excessive sugar consumption and other conditions including obesity, as well as on early detection, signs and symptoms of diabetes, and what is required for people living with diabetes to control and maintain blood sugar levels.

In 2023, I joined Diabetes Initiative Indonesia, which raises awareness among young Indonesians about diabetes. Compared with Persadia Muda, Diabetes Initiative Indonesia places particular focus on diabetes prevention prior to diagnosis, particularly for young people, and consists of doctors, medical students, people living with diabetes, caregivers, and diabetes educators. We are trying to create a movement to provide young Indonesians with information on how to prevent the onset of diabetes, recognise the early symptoms, and manage the condition to prevent the development of diabetes‑related complications.

We also work to ensure that risk factors such as sugars and processed foods are controlled and minimised by decision makers. Currently, several NGOs and youth communities are campaigning for the government to apply excise duty on packaged sweetened beverages. We are also campaigning for the government health social security to cover blood glucose test strips, as blood glucose monitoring plays a critical role in controlling blood sugar level.

To present our key asks, we, the people living with NCDs and diabetes in Indonesia, call on the government to:

• Implement health education campaigns to increase Indonesians’ awareness on prevention, including risk factors and symptoms of diabetes and other NCDs.
• Increase the number of specialised doctors and medical workers such as nurses and lab technicians so that people all over Indonesia have better access to diabetes and NCD prevention and early detection services.
• Introduce excise duty on packaged sweetened beverages to reduce the consumption.
• Ensure coverage of blood glucose strips by the government health social security.