Type 1 Diabetes Champion: Paladie’s Story
Voices of NCDI Poverty Advocacy Fellow Paladie Mategeko was diagnosed with type 1 diabetes at age 12 after months of suffering with thirst, fatigue, and excessive weight loss. The pressure of managing a severe, chronic non-communicable condition as a child as well as stigma from peers wrecked havoc on Paladie’s academic performance and mental health. Through therapy, support from family and friends, and making connections with others living with type 1 diabetes in her community, Paladie started to love herself again.
But Paladie truly began to thrive after she connected with others living with type 1 diabetes in her community through the Rwanda Diabetes Association and has since dedicated her life to helping others living with severe, chronic noncommunicable diseases overcome the challenges of stigma and poverty. During her fellowship period, she brought people living with type 1 diabetes together in support groups in the underserved Eastern Province of Rwanda. In this article, she shares her experience living with type 1 diabetes and her hopes for the future of health care in Rwanda.
by Paladie Mategeko
Paladie Mategeko is a health advocate and person living with type 1 diabetes in Rwanda.
I was diagnosed with type 1 diabetes in 2010 when I was 12 years old. I live in Rwanda and the doctors I saw were not familiar with this condition. They gave me painkillers, but they never thought to test me for type 1 diabetes because of the misconception that only old people get diabetes. As a kid I loved to play, but I grew weak and lost a lot of weight — around 10 kilograms. I would throw up often, drink a lot of water, and use the bathroom all the time. Those are all symptoms of type 1 diabetes, although my family and doctors didn’t know it at the time.
Things got so bad that I didn’t get out of bed for three days, so my mother took me to the hospital. I barely remember it because by then I was slipping in and out of consciousness. At the hospital they took a blood sample and realized my blood sugar was way up, so they gave me insulin right away.
After I’d spent about a week in the hospital, a doctor came in and sat on the bed with me. I’ll never forget the moment he explained type 1 diabetes to me. Dr. Joseph told me my condition was chronic, which meant I would have it forever. He said I would have to inject myself with insulin to manage my blood sugar, and although it would be hard at first, he promised I would get used to it. More importantly, he reassured me I would be able to live a great life. I am so grateful that he explained my condition to me in a way that didn’t scare me.
Dr. Joseph told me my condition was chronic, which meant I would have it forever. He said I would have to inject myself with insulin to manage my blood sugar, and although it would be hard at first, he promised I would get used to it. More importantly, he reassured me I would be able to live a great life.
Dr. Joseph was right — things were hard at first. Many health care professionals I saw did not understand the disease. During the two-week hospital stay that followed my diabetic ketoacidosis, a nurse almost injected me with 10 times the normal dose of insulin because she did not have proper training. Luckily, my mom noticed the syringe had much more insulin than usual and stopped her.
Paladie (right) with her mother.
My family helped me a lot during this period because it wasn’t easy for me to manage such a serious condition at such a young age. I had to inject myself with insulin multiple times a day, and sometimes I would forget. Luckily, I had my family to remind me. Sometimes I would be too tired or sad to inject myself, so my mom learned to do it for me.
The feeling of being different took a toll on me. At the time we thought diabetic people couldn’t eat fried food or anything with salt, so everything I ate was boiled and had little flavor. My mom would prepare my food separately, and I often ate alone because my family’s food wasn’t ready yet. She’d tell my family members that certain food was only for me, which bothered me because I didn’t want to be treated as vulnerable or different.
Misconceptions and misunderstandings about type 1 diabetes and appropriate care are common. I even almost switched to a school closer to home because my mom thought my insulin needed to be kept in the fridge, and because I had to inject during the school day, I needed to be close to home. Luckily, experts at the Rwanda Diabetes Association told my mom that my insulin in use did not need to be refrigerated. They also emphasized that I didn’t have to eat only boiled food, and in fact I needed to return to my normal diet so I could gain back the weight I had lost.
My mom did the best she could with the information she had, and I am so grateful to her. She has been with me every step of the way; she was at all my doctor’s appointments and was always asking what she could do to help me. I know I’m lucky that my mom has always been there because I have met patients as young as 10 at the Rwanda Diabetes Association who came in alone and did not understand their condition. Because of my mom’s love, my condition was mostly well controlled growing up. If I could, I’d give her the world.
Misconceptions make stigma
Widespread misconceptions about diabetes meant I experienced a lot of stigma. My neighbors told me I would have to stop studying and would die within a year or two. My mom was pregnant when I was diagnosed, and I remember one person saying, “See? Even your mom knows you are going to die, so she is having another baby.”
The stigma I experienced taught me to hide my diagnosis, which made school stressful. My school prohibited food, but one day I had a low-blood-sugar episode and had to ask my friends if they had any snacks, so people found out about my condition. Some of my classmates dismissed me and said I was exaggerating, and others made me feel different and excluded.
As I grew into a teenager, it became harder to ignore the community’s stigmatization, and I fell into a depression. I wondered why I had to live with diabetes and I envied my classmates, who could eat whatever they wanted at any time. I started to believe the people who said that I wouldn’t be able to make anything out of my life, and I stopped taking care of myself. I gave up on injecting my insulin consistently and I developed chronic headaches. I missed a lot of school and felt like no one understood me.
I dwelled on these negative thoughts until I went to therapy and started loving myself again. Luckily, I had the support of a close friend who told me that when she looked at me, she didn’t see diabetes. She was confident I would make something of my life, and I knew if I didn’t start properly managing my diabetes I would develop dangerous complications. Once I had the support I needed, I wanted to prove those who told me that I couldn’t finish my studies wrong. I jumped into my studies with a renewed sense of focus and went on to graduate from both high school and college.
I found my purpose when I started volunteering for the Rwanda Diabetes Association. It was especially rewarding to work at type 1 diabetes youth camps. I remembered the loneliness of not being able to talk with anyone who understood, so I wanted to be a sympathetic ear for others. I also had the opportunity to show young children how to use their blood sugar monitor.
By meeting other people with type 1 diabetes, I understood I wasn’t alone. What’s more, I realized that many of my peers were worse off than me. Type 1 diabetes not only requires time and energy to manage, but also money to buy insulin and other supplies. Some of the stories I’ve heard from others living with diabetes in Rwanda are heartbreaking. One person told me that when they have low blood sugar, they don’t always have food to eat. Another said that because they don’t have enough food, they take their insulin only once a week.
Some of the stories I’ve heard from others living with diabetes in Rwanda are heartbreaking. One person told me that when they have low blood sugar, they don’t always have food to eat. Another said that because they don’t have enough food, they take their insulin only once a week.
Paladie earned a Bachelor’s degree in healthcare management with a concentration in global perspectives.
Some people did not have access to insulin at all because insulin was only available at hospitals and not at health centers in rural communities. If you did not have money for the bus, you would have to walk for hours to the hospital every month. If you’re walking for several hours to the hospital, waiting many more hours for your insulin, and then walking several hours home, your blood sugar will be low. On top of that, you would miss a day of work and pay.
To meet this challenge, other people living with type 1 and I organized a system where we would take turns traveling to the clinic to collect insulin for everyone. When clinic workers realized traveling to access insulin was a hardship, they started giving everyone enough insulin to last them two to three months. Patient groups can provide not only emotional support to each other, but also enact real change.
The access to diagnosis and treatment for non-communicable diseases (NCDs) offered through the PEN-Plus program has been life changing for patients in Rwanda. Through PEN-Plus, rural clinics have specially-trained staff, equipment, and medicines to treat severe, chronic NCDs like type 1 diabetes, rheumatic heart disease, and sickle cell disease. PEN-Plus also provides social support in the form of transportation costs so people living with type 1 don’t have to walk for hours for insulin. I am excited to see so many other countries in Africa working to implement PEN-Plus because NCD treatment and medication should be available to everyone who needs it.
Much of my outreach work is focused on diabetes education because it’s important to eradicate the many misunderstandings about the condition. When I get in front of people, the first thing I say is that I’m living with type 1 diabetes. My energy and enthusiasm silence the voices that said I would die. People who live with type 1 diabetes and other severe noncommunicable diseases are no different from anyone else.
*The Voices of NCDI Poverty Advocacy Fellowship provides people with lived experience with NCDIs in the countries representing the poorest billion with mentorship, training in building successful advocacy campaigns, financial compensation, and the opportunity to take a voting role in the governance of the NCDI Poverty Network.