One of Salama Matar Alayadi’s most vivid memories of her childhood is the day her teacher announced to her class that Salama had diabetes. Even more vivid for her are the scenes that followed next: first, of how much more the word ‘diabetes’ scared her when she heard it announced although she’d been aware of the diagnosis and, second, of how almost immediately none of her classmates wanted to talk to her.
Now 19, Salama was diagnosed with Type 1 diabetes when she was nine years old and remembers reacting with a range of emotions anyone that age would exhibit. ‘I was shocked, scared, nervous. Even my parents had the same reactions. Then my relatives kept asking my parents the whats, whys and hows of the condition; they mentioned how I had my whole life ahead of me, that I was so thin, so small, so young to be getting it, why I got it, how I would manage it...’
Back in school a few days later, Salama found herself ostracised by her classmates ‘because they couldn’t eat sweets in front of me’ and quickly concluded that everything would change for the worse now that she had been diagnosed with this health condition.
The reactions of the people affected her not just mentally, but physically as well. She avoided taking medications so that she could blend in with her classmates and not appear to be different from them in any way. ‘I’d eat foods that I wasn’t supposed to, and I did it multiple times. I remember playing a lot of games and later, when my classmates would head off to the sweet shop, I’d join them and eat sweets forgetting about my diabetes.’
Once while on a school trip, she avoided taking her medication ‘as I didn’t want to inject myself in front of other kids, because that would mean having to answer all kinds of questions from them’. But the result was that by evening, Salama was so sick, tired and thirsty she had to visit the school clinic.
That was not all. Salama started avoiding friends and acquaintances ‘as I didn’t want anyone to know I had diabetes because I felt then they’d treat me like I was less than them... I didn’t want to hear comments like ‘This sick person can’t eat dessert’.’
It’s tempting to file away Salama’s case as an exception, as kids who don’t know better. But discrimination towards those with diabetes is all too rife. And shockingly, it is not restricted to just among kids. Adults too are victims. Last year, the charity Diabetes UK research found that one in six people with diabetes felt they’ve been discriminated against by their employer because of their condition.
But workplace discrimination is just the tip of the iceberg. A study done in Switzerland found diabetic respondents who reported higher levels of perceived stigma reported higher levels of psychological distress, more pronounced depressive symptoms and less social support. This in turn predicted lower quality of life.
Warped versions of the truth about the condition and negative stereotypes are all-prevalent, with diabetes often conjuring up an image of faceless overweight people gorging on candy.
If adults struggle with it, the implications on a child are sure to be immense. As facts are surrendered to myth, the challenges facing these kids, and those who support them every day only rise in intensity.
Take the case of a student Kayla Hanna. A Type 1 diabetic, she recently won a payout after a judge ruled that her treatment at a Red Hot Chili Peppers concert in Belfast, UK, in 2016, amounted to discrimination. The security guards had refused to let her take a bottle of energy drink to treat hypoglycaemia into the venue, even after she showed them her insulin pack and glucose monitor.
If the stigma stopped with others’ beliefs and mark of disapproval, there probably wouldn’t be as much cause for worry. But as in Salama’s case, it also affects sufferers’ ability to manage diabetes’ care and how they approach it.
Dr Amani Osman, consultant paediatric diabetologist at Imperial College London Diabetes Centre, sees this play out almost daily. Beyond the physical treatment, early on she started to notice that when diagnosed, kids went into their own world, where they had a perception that they may be different. She pins it down to the exact moment of diagnosis: to how the family reacts to the situation. ‘Some mums react with real astonishment and shock and tears and grief,’ Dr Amani says. ‘Inadvertently, this will translate to the child that something bad has happened. And they get the impression that something is wrong with them, even if the school or community around them may not treat them differently.’
The doctor recalls the mother of her patient who appeared so devastated by her child’s diagnosis that she told Dr Amani, ‘I can’t tell anyone about this, not my friends or my daughter’s teacher or the team at school’.
‘It was the mum’s way of not really accepting the diagnosis,’ she says.
This misunderstanding has roots in both fear and the lack of education, says Dr Amani, and automatically results in creating a sense of shame in the child. ‘This is a hit on their self-esteem, to the extent that sometimes they even feel guilty, as if they did something to bring diabetes upon them – it’s the lack of perception. Their confidence is shaken, and their ability to have friends and be happy is also shaken.’
According to Dr Amani, while such kids might not face overt bullying as we know it, they may face it in the form of exclusion. ‘I have had mums come to me and say their child was very upset because there was a school trip and the child was told they couldn’t go because of their diabetes.’
Having to eat and play alone and face taunts from other children for no fault of theirs could take a huge toll on the child. ‘Imagine going through life with no friends at school, and being sad and lonely every day. That’s a reality for many kids with the condition,’ says the doctor.
Dr Amani says the negative impact of stigma on diabetes management was reinforced a few years back when a device was made available that monitored blood sugar of kids for 24 hours. ‘I noticed that during school time, their diabetes was not well controlled – that there was a rise in their sugar levels.’ She did some probing and found that some kids avoided taking insulin because they wanted to fit in with their friends in school, or they would consume sweets or juices because these were not allowed at home.
Some kids also found the break time too short to go to the nurse to have their insulin shots, ‘and they didn’t want to be away from their friends’.
Quashing the judgement is critical. ‘We have children with depression, those who are burnt out, from the sheer fact that not only do they have to take care of their diabetes about five times a day, but also the burden of the stigma.’
But Dr Amani has seen the flip side: the side where whenever the family accepts the diagnosis with a positive attitude, it makes all the difference in a child’s life. ‘When parents say to the child “we’re going to be friends with the diabetes, we’re going to control sugar positively, go out and eat healthy and be doing exercise”, they then make sure their child has confidence and self-esteem, and then kids also seem very happy to speak to other children and say ‘look, I have this condition, shall I tell you about this.’ This leads to both other kids getting informed and the diabetic kid feeling supported.
This is evident in the case of Dubai resident Jack Wilkins, 11, who was diagnosed with Type 1 right after he turned eight. ‘I was in hospital for a week, and I didn’t really know what it meant,’ he says. ‘It has been a big change for me and my life, but I didn’t realise it then. But mum made it easier because she drew a cartoon for me so I’d understand it better, and explained it to me, and said it’d be OK.’
This acceptance and reassurance also helped Jack put his condition into words. While he says he feels that most people don’t really understand diabetes well, ‘I explain to them and I don’t freak out or get mad about it.’
At school, the self-consciousness didn’t last long either. Jack says initially he’d secretly take the injection so no one would see but he also wouldn’t put himself at risk. ‘No one in my school knew what it meant either.
‘After a while I’d take my injections in front of my friends and then would explain diabetes to them. There were instances where people have said some mean stuff about it. Once at a food court a friend’s friend said I probably couldn’t pick up my food tray because I had diabetes. I thought about it a while but then decided I could deal with it myself. But, as in my last school I was known as the kid with diabetes, in the first two weeks at my new school this year I thought of not telling anyone. But later I started to tell people, and now it doesn’t matter. It was better to tell everyone because they would then help me sometimes, like if my sugar went low they’d take me to the nurse.’
The need of the hour seems to be asking a child ‘how do you feel’ along with ‘how is your blood sugar doing’. With diabetes, traditionally the tendency has been to forget the emotional effects because the physical ones are so overwhelming too.
Jack’s mother Louisa concurs: ‘I don’t think people recognise the mental burden of it. Even for me in my job as a journalist I had written so many articles on it and knew quite a lot, but nothing prepared me for understanding what families and kids with diabetes go through until Jack was diagnosed. You don’t live a normal life, you can’t eat anything without doing the math, all the injections – Jack can give himself up to 11 injections a day, and that’s not a normal life. And unfortunately it’s not like getting rid of a headache – he needs to do that to stay alive.’ She feels there is a PTSD element to a diagnosis, for the child and parent, ‘which is often not treated or spoken about. It’s massive.’
Louisa says Jack has been luckier in facing the stigma the condition comes with, adding it all came down to the teachers. ‘When he was diagnosed he had been in that school for a long time and the staff were amazing, the nurses were amazing. They educated the other kids in the classroom, they involved the kids, and they normalised things like Jack checking his sugar. So Jack didn’t face any bullying.’
But the stigma came from other corners. ‘Jack went on a school trip recently and due to laws, his school teacher would not be able to administer a life-saving injection if he needs it. I had to sign a waiver to say I accepted that if he was unconscious nobody would help him. I don’t think any other parent was being asked to sign their child’s life away on a school trip. That’s discrimination as my child isn’t being given the same safety as others. The option given by his school was that he should go on a different trip with a school nurse – that’s discrimination too, as he’s been made to feel different from his peers.’
She says she’s also no stranger to the look she gets when she tells people her son is diabetic – ‘it’s that “oh typical Dubai child, obviously has a poor lifestyle and has been eating a lot of sweets and is greedy or lazy” look. There is that assumption, but that’s because people don’t know, so I never hold that against anyone. Most of the time people are very empathetic or show sympathy, but you sometime see a fleeting look of judgment, but I know it comes from a place of not knowing.’
‘The irony is out of my two kids Jack was always the one who loved vegetables.’
Louisa says ensuring Jack didn’t feel he had lost his childhood was crucial to the family. ‘Or him feeling weak or sick or unable to live the life he wanted. We didn’t want him to stigmatise himself. So we try giving him as much as freedom we can - within safe boundaries. That meant empowering him as much as possible as quickly as possible.’
For her, connecting to other such parents has helped immensely. ‘There’s an amazing community for diabetics here in Dubai, hundreds of mums on a Whatsapp group, with every week new parents being added. It’s such a good resource. It’s also great for kids to meet other kids who are diabetic.’
Dr Amani says trying to make a child’s journey with the disease a pleasant one is key, as is sending a clear message to them that there is nothing wrong with them and diabetes will not stop them from achieving their dreams. ‘And that it will never be a source of embarrassment or taboo. They’ll be able to finish school, have higher education, get married, have kids and lead a normal life, provided they take their insulin and adjust their lifestyle to be more organised and inclusive of all the targets set by the doctor.’
She says the solution to counter the stigma isn’t just one-dimensional – healthcare professionals have a role. The family does, the school does, and the child themselves does too. ‘There is education, but what’s required is to take it to another level where diabetes is not looked upon as a disease or an illness but as a challenge, so that the child will only get stronger and smarter and healthier.’
Despite Salama’s bad start, everything fell into the right place for her eventually, and the electrical engineering student says she no longer has a bad relationship with diabetes. ‘I started realising I need to change for myself, and my mum was a huge support, coming with me for appointments until I was 18; she’s also diabetic. I had been unhealthy, and ate all sorts of junk food and desserts, but I started making healthy changes. I tried different sports. Soon I realised it would all turn out to be fine. I started understanding the disease, and treating it as a friend.
‘It took me a while to realise that all along I had been normal, that I wasn’t less than anyone, that I was just like any other child too.’
Hypoglycaemia symptoms and management
Hypoglycaemia is the term used when glucose levels are too low. This could be caused by:
- Not enough food, for example if you have missed a meal.
- Too much insulin (mismatched levels of insulin to carbohydrate).
- Extra exercise or more activity than normal (unplanned activity).
Hypoglycaemia or a ‘hypo’ is defined as a blood glucose level of less than 70mg/dl (4 mmol/l) and should always be treated.
Signs and symptoms to look out for during hypoglycaemia
- Tired or sleepy
- Lack of concentration
- Too confused to eat or drink
- Slurred speech
- Blurred vision
- Unsteady on feet
- Semi-conscious or unconscious
Tips on dealing with hypoglycaemia
- Always carry a hypo kit and food with you.
- Keep supplies to treat hypoglycaemia in your desk, in the car, in your gym bag, etc.
- Do not ignore mild symptoms and do not delay treatment.
- Check blood glucose whenever possible to confirm hypoglycaemia
- Chocolate is not recommended to treat hypoglycaemia as the fat in chocolate slows glucose absorption into the blood.
- Products such as chocolate, jam or sweets that are marketed and labelled as ‘diabetic’ – are not a healthy alternative.