Diabetes sufferers begin life the hard way

The taboo surrounding chronic illness need to be broken, say those living with type 1 diabetes 

For Rachel Portelli, the founder of an online platform called Supporting1Another, living with Type 1 diabetes on the sister island of Gozo has always brought it with an element of isolation.

“When I was growing up in Gozo I always thought I was the only one, because no one spoke about it; when I went to the hospital, everyone would be very hush-hush about it.”

Things may have changed since Portelli was a child, where it is well recognised today that Malta and Gozo have one of the highest rates of male obesity at 68% when compared to other EU member states, and the third-highest among females, at 49.1%.

But Portelli said growing up with diabetes was hard. “People would always say ‘if you eat well and exercise you’ll be fine’, or that if I didn’t eat too much sugar I wouldn’t have diabetes… it makes you feel like you’ve brought this on yourself when you haven’t – and that’s when some start blaming themselves or even others around them.”

Type 1 diabetes causes the level of glucose (sugar) in your blood to become too high, and it happens when your body can’t produce enough of a hormone called insulin, which controls blood glucose. Sufferers need daily injections of insulin to keep your blood glucose levels under control. But managing type 1 diabetes can take time to get used to.

Rachel Portelli
Rachel Portelli

A recent study by Research Trust Malta established that one in eight Maltese adults aged between 25 and 64, suffer from diabetes, of whom approximately 10,000 as of 2017 are unaware of the disease.

The International Diabetes Federation (IDF) also predicts that by 2045, 45.2% of Maltese adults will have diabetes. In 2017 there were 42,300 adult cases of diabetes in Malta, with 170 Maltese children and adolescents having Type 1 diabetes.

Portelli says diabetes affects people according to the stage of life they are in. “My priorities as a child or even a teenager were different to my priorities now, and that affects the way you deal with your condition. Living with diabetes means constantly needing to make decisions on a daily basis… it’s like taking a multiple-choice exam on a daily basis.”

Additionally, sufferers are prone to ‘diabetes burnout’, which is when they tire of living with the chronic illness and stop checking insulin levels or even stop taking insulin altogether.

“Most people don’t talk about it. Every day they tell you, ‘you need to take insulin’, because the thing is, it doesn’t matter what diet you’re on, what exercise you’re doing, whether it’s from morning to night – you need insulin, without it, you cannot cope. If you just don’t take it for a day it’s going to affect you negatively, let alone if you don’t take it for weeks or months, in which case you’ll end up in hospital,” Portelli says.

And for sufferers, there is really nothing to do about it except manage it as best as they can.

Which is why Portelli started her platform Supportng1Another, so that people can easily reach out on Facebook and Instagram, as well as share their experiences on the website.

“Health professionals talk about topics that aren’t usually discussed at hospitals; there’s also an option to speak anonymously – Malta and Gozo are indeed small, and while I myself might not be a health professional, I do have life experience. What helped the most growing up and enabled me to accept my condition above all, was speaking to people who had first-hand experience with chronic illnesses.”

Liam ,  11
Liam , 11

Yasmine Tabone’s son Liam also lives with type 1 diabetes. The family had to struggle with Malta’s education system.

“My son was only 11 months old when he was diagnosed. We struggled getting him through kinder and primary school. He was only three when he started school, and yet he was expected to take care of his condition on his own,” Tabone says.

At such a young age, it was impossible for Liam to calculate his own levels of carbohydrates, and whether he was feeling okay or not. “Teachers are limited in what they can do because they don’t want to be held liable; it’s not because I wanted them to administer the insulin themselves, but in a life-or-death situation… these children could die if they don’t act.”

Tabone says she found it ridiculous that all her son could be given by way of assistance was a shared Learning Support Assistant. “At the end of the day they still couldn’t do anything more than a teacher could do.”

In October 2019, the Maltese Diabetes Association raised concerns after the parent of a child with diabetes who had been told that no school officials would administer any medication to their child, due to lack of training. The association called for a qualified nurse to be stationed at every school.

“People need to realise it’s not just about not eating sugar; in fact, my son eats more sugar than me. People need to stop being scared about helping another child, much as when it comes to other allergies. They have to realise that this is a serious condition. My son had his first seizure at one year and a half: the night times are horrible – their blood sugar goes up and down. It’s a 24/7 condition; it can’t be worked around a schedule,” Tabone says.

Portelli echoes those sentiments. Having recently penned her debut short-story collection ‘Special 1’ – a collection of stories that type 1 sufferers can relate to – she says the State must act more to help young children in schools, as well as adults in the workforce.

“Things need to be made easier for these people. I’m not just talking about telling them to tell their employer – but to educate them more. Discrimination still exists, even though refusing to hire someone on the basis of their chronic illness is illegal. By educating employers, as well as educational staff at schools, the State would be helping people with this condition to feel safer, and encouraging them to get on with their life.”