‘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

Malta Independent - - INTERVIEW - RACHEL PORTELLI

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.

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