Living with diabetes – Alexandra’s story

“It’s important to me that diabetes doesn’t interrupt my life” - Alexandra

Alexandra helps people in Lisbon, Portugal, with how to deal with their diabetes through a peer support group.

“I help people with diabetes to accept the disease and control and manage it. It’s really rewarding. I feel happy when I have success organizing activities for people with diabetes. When I feel that the time we spent together has changed our lives a bit and we feel more comfortable talking about diabetes, I feel happy at the end of the day.” 

For Alexandra, this is personal. She was diagnosed with diabetes when she was ten. “When I received the diagnosis, my parents forced me to start doing sports – this was the best thing they did for me with my diabetes. It helped me to accept the disease and to manage it. I went to a summer camp that changed my life because I met other children and adults with type one diabetes – they taught me how to live with diabetes and how to accept it and now I try to do the same with the others. That’s what makes me move – I fight for this cause.”

Managing diabetes is more than treatment

Alexandra is one of the 1.1 million adults living with diabetes in Portugal and she is keen to share her 28 years of experience in managing her condition. She was fortunate that her parents quickly understood that managing diabetes was not a case of just taking insulin and being a patient, with regular checkups at the clinic. They encouraged her to exercise, adjust her diet and take responsibility for her health. 

“It’s a disease for life. I eventually learned that if I accept the disease, that I must do certain things, like control my blood sugar and exercise, then I can live a normal life. This way, diabetes doesn’t take time or space from family and friends. It’s important to me that diabetes doesn’t interrupt my life. It may sound odd but to do that, I need to include diabetes in my life.”

Sport has also become a very important part of Alexandra’s life. “I was a swimmer until I was 16 years old. Then I started to play Korfball and nowadays I am a coach for a Korfball team. It’s not just an issue of keeping fit, but also makes a great difference, both socially and mentally.”

Preparing for the unplanned

Diabetes requires almost constant monitoring. Alexandra lifts her shirt, revealing a round plastic button stuck to her waist. “My insulin monitor has just given me an alarm that it’s time to change the sensor. I have to do this once a week.” She peels off the monitor and replaces it with a fresh device. When asked if her diabetes limits her life in any way, she replies, “Well, when I go on holiday, I have to make sure I have double of everything. If my flight is delayed or something unforeseen happens, I must be prepared and have enough insulin. I have a checklist and once those items are packed, I can relax. I have to think ahead and plan; I cannot go on holiday without a plan.”

She goes on to give more details about the impact of her diabetes. 

“I also always have a backup kit – an insulin pen in my handbag, for if technology should fail. Other than that, I’m not limited. I eat normally, I take my daughter to her school in the morning, I see my friends, play Korfball twice a week and go to work. I started driving a motorcycle during COVID, to avoid public transportation as we with chronic diseases are more vulnerable, and I love driving to work this way. It gives me an enormous sense of freedom! Riding my motorcycle is the best part of my daily routine.”

Making a difference

“It’s important that policy-makers make sure people around the world have access to insulin and the right treatment, independent of the place where they are born. I’m fortunate to be living in Portugal, I work at the Portuguese Diabetes Association (APDP) – the biggest association for people living with diabetes in Portugal. It was established in 1926, between the two world wars – when there was pressure to use resources on a lot of other things. But the founder was frustrated by the scandal of the deaths of poor people with diabetes who, without any public assistance, had no means of purchasing insulin. So, he mobilized people with diabetes, the patients and friends, and created the APDP. Through that, education for people with diabetes began, to enable them to self-inject, monitor themselves to prevent complications, and to understand their condition.”

Alexandra adds, “Although I think about diabetes a lot every day, I feel I am a healthy person because my diabetes is controlled. I’m lucky, because I live in Portugal. I have a very good health system, and very good access to treatment. I have a chronic disease, but I don’t feel sick because I am very well treated.”

Alexandra Costa was interviewed in the context of the high-level technical summit “Accelerating action on commitments to improve diabetes detection and quality of care” organized by WHO/Europe and the International Diabetes Federation (IDF) Europe. Participants at the summit on 28–29 November 2023 in Belgrade, Serbia will discuss making diabetes a priority in the permacrisis era, aiming to accelerate action.