“The hardest thing is never being able to really relax”

Cajsa is from Sweden and has been living with type 1 diabetes since she was 13. She is also a brain cancer survivor living with multiple cancer-related conditions. She is a global health advocate, and works at the Swedish Trade and Invest Council, as a senior consultant and their Nordic lead on health care and life science.

It was a neighbour who first suggested that Cajsa should be checked for diabetes, recognizing her thirst, frequent urination and weight loss as possible symptoms. She herself felt fine and she and her family were stunned by the diagnosis. She was in hospital for 2 weeks to monitor and stabilize her condition and prepare her for what lay ahead. Being diagnosed at an age where you often want to be independent and also fit in with friends had a big impact on her. She was determined that she would manage the condition alone and felt that she didn't want to be a burden or ask anyone for help. Her first instinct was "I can do this".

This was not helped however by an incident she will never forget when a nurse told her, "Never use your thumb and index fingers for pricking your blood, as you will need them for when you go blind". This frightening instruction at a young age left a strong impression on her. The fear of complications has always been on her mind, even though she now has the experience to understand that the nurse's words were inappropriate.

She feels that diabetes quickly becomes an issue of control. "You always have to be in control. I think it has definitely made me a little bit of a control freak. You have to be constantly responsible for your health, checking from minute to minute the many factors that can affect your blood sugar - not just counting carbs but also being aware of for example, your sleep, the heat, your hormone levels, stress, dehydration, insulin, exercise and all the data gathering. It becomes an obsession. This self-management happens between any doctor appointments. The new technology of course makes everything easier, but the hardest thing is never being able to really relax."

Taking time to listen

Her cancer, its treatment and the chronic conditions she is living with obviously made this even more complicated. She presses for more integrated, more coordinated care. Another thing that is important to her is that the care should be person-centred. "Diabetes nurses are very central to this, as they are often the ones who have more time to talk and listen and can have insight into what the patient needs."

She thinks the public do not always realize the seriousness of diabetes: "Insulin is like oxygen for people with type 1 diabetes - without it, we die." This knowledge impacts on well-being. In addition, for many people, diabetes impacts their mental health as much as it impacts their physical health, and it varies throughout life. "You can feel overwhelmed and sad not only at the time of diagnosis, but throughout life, and it can rise and fall."

However, she feels she has never missed out on any major opportunities in life or in her career. She has felt energized by the people she has met professionally and at international youth programmes for people with diabetes, who have inspired her to make the best of life with the condition.

Person-centred care, which Cajsa so values, is the approach taken by the recent WHO/Europe publication, "Therapeutic patient education: an introductory guide". This publication aims to help policy-makers and health professionals provide effective therapeutic patient education for all patients living with chronic conditions. The goal is not only to improve decision-making about clinical care by involving the patient through education, empowerment and support, but to help them live a more meaningful life.

Background on diabetes: what are WHO Member States committed to?

It was in 2022 that WHO Member States first supported the creation of global targets for diabetes, as part of recommendations to strengthen and monitor diabetes responses within national noncommunicable disease programmes.

WHO/Europe and the International Diabetes Federation Europe have agreed to accelerate progress to meet or exceed these global diabetes targets for 2030:

• 80% of people living with diabetes to be properly diagnosed;
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• 80% of them to have good control of glycaemia and their blood pressure;
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• 60% of people with diabetes and who are 40 or over to receive statins; and
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• 100% of people with type 1 diabetes to have access to affordable insulin and blood glucose self-monitoring.

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