‘I am not Diabetes’ - Rachel Portelli, type 1 diabetic
has type 1 diabetes. The 24-year-old graduate has never known any different, and although diabetes is an everyday struggle, her determination and achievements allow her to live a life she deserves and wants. Speaking to Rebecca Iversen, Rachel gives an o
When did diabetes all start for you? When were you diagnosed?
I was diagnosed when I was three-and-half years old. Of course, I don’t remember this, but diabetes is all I’ve ever known. It was harder on my parents, obviously, since there wasn’t much awareness of the condition at the time. My mum always said that she didn’t even realise that children could have diabetes and that there was type 1 and type 2.
There was such little awareness at that time. Today you’d see symptoms and you would know these are type 1 symptoms. In fact, my dad had overheard a conversation in which it was said that people suffering from high sugar levels drank a lot of water. And those were the symptoms I was experiencing.
What is day-to-day life like with diabetes?
Every single day I need to think about diabetes. If I want to go abroad, I need to have all the necessary medications so that if anything happens while I’m out there, I’ll be covered. A day without insulin could have detrimental effects.
This year I went to Liverpool and our flight was in the early hours of the morning. Both my brother and I are diabetic and we both woke up hypoglycaemic, meaning we had very lower glucose levels.
However, when you’re asleep and ‘hypo’, you don’t have the energy to treat yourself. So my mother is running around giving us juices at 2am. In the panic, we ended up forgetting the insulin in the fridge and the worst part is we realised all this when we had landed. All we had was the insulin on us, and the panic set in.
Can you speak about your struggles with type 1 diabetes? How has it been growing up with such a condition?
When I was at university my blood sugar levels were a disaster. One minute I was ‘hypo’, the next my glucose levels were through the roof, mostly due to stress, which wreaked havoc on my blood glucose levels. Even a cold can affect me. I know I’m going to be a sick roughly two days before. My sugar levels tend to spike like crazy, so I know it’s coming.
I don’t remember a life without diabetes. Some say it’s better to be like this than to have to suddenly rearrange your lifestyle around it. However, it was very difficult growing up, and there was a period where I did take my insulin, but apart from that, I didn’t care to take care of myself.
Who knows how many times I left home without first checking my sugar levels. In your teenage years you want to fit in and do what your friends do, and enjoy your life. It was difficult for me to have diabetes constantly on my mind. When I started university, in fact, I ended up in hospital three times in my first year. It was after that that I realised I was going to seriously harm myself.
I started being hospitalised, that year, for symptoms similar to gastric virus, including throwing up, due to uncontrolled sugar levels. I would end up at the CCU every time because I used to be in such a bad state. I started to realise that being this ill was effecting my life more, and from that time I started to take much better care of myself. I became involved in the diabetes association, I joined a student organisation about diabetes, and this month we held a seminar at the university from the social perspective, because the social aspect is as important as the medical one.
In fact, I learnt my lesson, so much so that by the time I finished university, diabetes had started to affect my sight. I check my eyesight yearly. Before I started my last year at university, it was good, but around May I started seeing black dots. My mind was telling me that something was wrong but I was telling myself that this was from spending all those hours in front of my laptop. When I woke up the next day and the spots were still there, I knew that something was wrong. Of course, I assumed the worst.
Eventually, the doctor told me I had retinopathy – a complication from diabetes. You start thinking about all those times you did not care. You start blaming yourself, but at the same time, you know that you can’t go back in time.
Many people would tell me to take better care of myself but I was young and it was exhausting hearing the same thing. I wanted to have fun with friends.
I was even scared of having relationships because of diabetes. I just couldn’t see how I could take care of a chronic illness and be in a serious relationship. I didn’t want a life of constantly having to check my blood sugar to see if I can eat, go out or do anything.
Unfortunately, I got retinopathy during the exam period. My exams and treatments were due on the same days but somehow I still managed to graduate in Social Policy. Diabetes affects my whole life.
Later on that summer, my father had a heart attack while I was abroad in Brussels for my internship.
One day I realised I couldn’t really see from my left eye and I had another bleed. I went to the hospital there and I was told I would need immediate surgery. I returned to Malta in secret – I did not even tell my parents because my father was still in hospital.
Towards the end of that summer I felt so down. I didn’t want to go out and socialise because I really didn’t want to be asked about what I had gone through. Such experiences, however, push me to carry on raising awareness and working in the context of Europe in regards to diabetes.
What’s your advice for others who suffer with type 1 diabetes?
I have still managed to live in Brussels and do an amazing internship, despite living with
type 1 diabetes. I will always have to be cautious, but I’ve managed to achieve many things. I have met many people who have just been diagnosed, and of course it is a lot to take in.
It’s very difficult, and I understand that. So when I meet with people who have just been diagnosed, I always say that if you need to scream or smash something, well, you can. I would go buy plates or glasses and then we’d go and smash them up, letting go of the frustrations.
When you look at me you don’t go ‘Oh, she has diabetes.’ It is a big part of my life, yes, but really you’re just a person; you’re not diabetes. Diabetes should not hold you back, I’m still young and I have the whole world in front of me.
I love travelling and diabetes certainly hasn’t stopped me from doing that. Before I used to overthink: ‘Oh, I can’t go out to Paceville with my friends because of diabetes.’ But really life is about living. You should never give up. That’s my advice.