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21 August 2017

Highlights

Life with diabetes: "It doesn’t define me, but it has shaped me into who I am today"

Malta Lenise2Lenise Pace, one of IDF Europe’s youth advocates, has been living with type 1 diabetes for nearly 18 years. Here, she gives a very honest and moving account of what her journey has been like so far, and shares her advice for other young people living with diabetes.

“If someone were to ask me what diabetes means to me, I wouldn’t hesitate to answer! In two simple words, I’d say…“My life”. Diabetes sucks, but it’s my life, and like many others unfortunately, I had to learn to live with the disease from a very young age. It’s the first thing I have to think about when I open my eyes, and the last thing I think about before I go to bed. Although diabetes doesn’t define who I am, I have to say it did play a major role in shaping me into who I am today. If I could, I’d give everything I have so that the dead organ floating around in my body would come back to life and function the way it is supposed to, but I know that to this day, a cure has never been found. I don’t hate diabetes, and I try as much as I can to see eye to eye with the disease. I try to treat it well so it can reciprocate. But, as with many other things in life, it is easier said than done, and meeting difficult people who don’t understand, doesn’t make it any better.  So when someone posts a quote on Facebook about something silly that happened in their life and they say “What doesn’t kill you makes you stronger”, I smile and say to myself, if only you knew. 

I was only 7 years old when the first signs of diabetes started to emerge. There wasn’t much education on diabetes when I was diagnosed, so it was much harder then. Nobody noticed any signs I showed, even though I did show many of the classic signs like thirst, weight loss, frequent urination, fatigue and hunger. I used to go to the toilet 9 times during the night. I used to drink 2 liters of soft drink in under 2 hours. And my weight was dropping by the minute. I remember that once when I was playing netball and fainted, I was admitted in St. Luke’s Hospital and all they could find was traces of high blood sugar. That was it. I was discharged as a normal healthy girl, and continued on with my life. Two and a half years later, on 16 December 1997, I was severely sick, with no strength in my body at all. My general physician took one look at me and sent me to hospital. There, I was admitted and finally diagnosed with type 1 diabetes. I clearly remember my mother was gob smacked; she thought diabetes was something only people of old age got. On 23 December I was discharged, and my life changed forever. I was admitted as an innocent girl without a care in the world and was discharged as a little girl who went to war and survived the battle.

At school, kids used to ask me questions that hurt me, like, “You can’t have sugar anymore can you?” or “Can you drink this?”. The worst one was “Are you going to die now?”. As I grew up, I became more withdrawn and reserved. While other 13-year-olds started worrying about stuff you normally worry about at that age, like boys, make- up and heels, I was always worrying about if my blood sugar was too low or too high, or how I was going to summon the courage to inject myself. I had a happy childhood, but I had to grow up way too fast in order to be responsible and take care of myself. The more I grew, the more problems I faced. Friends who did not understand that when your blood sugar is low, you can’t wait to treat it until they are done with whatever they’re doing. Like the time I was low in class and had to go out to the corridor to eat something, or like when I started going to clubs, and had to be cautious with alcohol, not because of a potential hangover, but because I could potentially go too low and end up in a coma, or become dehydrated and go into diabetic ketoacidosis. Then boys came along, I always dreaded telling them about my diabetes. You always want to feel accepted, and diabetes, unfortunately, is still perceived by society as a taboo. On top of this, I had to worry about other problems that teenagers face, like puberty, exams, or that cute boy I liked.

Then I was introduced to the working world, and things got much more difficult, since some places don’t care if you have to eat regularly - if you’re busy, that will have to wait. In addition to all of this, I had other medical problems which I had to deal with and still am dealing with. And with diabetes, as many people know, it doesn’t stop there. Something new always turns up.

I’m afraid. I’m afraid of the complications that the disease carries with it. I’m afraid of glaucoma, cataracts and retinopathy, neuropathy, amputation, nephropathy, strokes, pregnancy. When a doctor mentions these words, I’m not afraid of them. I am not afraid of retinopathy, but I am afraid of losing sight of the most beautiful things in the world, like hearing my loved ones speak but never being able to see them, or never seeing what my children look like. When someone says amputation, I am not afraid of losing a limb, but I am afraid of losing my independence. When someone says stroke, I am not afraid of having a stroke, but I am afraid of being a burden on somebody like my parents or husband. I am not afraid of pregnancy, but I am afraid I will harm my unborn child with my disease. I’m not afraid of going deaf, but I am afraid of not hearing my children tell me that they love me. It’s always a constant battle to take care of yourself in order to avoid the above mentioned list of complications, to which one might add many more.

Hypoglycemia and hyperglycemia – I can’t even start. I hate it when in the middle of the night, I wake up because I am low, and almost in a sleep-like haze, I eat something and go back to sleep and feel dreadful in the morning, not to mention the fatigue. I hate it when I’m driving and I have to pull over to check my blood sugar level because I feel low. And if I am, I have to eat some carbohydrates, wait, check my blood glucose again, and if it is in the normal range again, only then can I drive. I hate it when I’m exercising and I go low, because then I have to stop mid-training, and it feels awful. And when my blood sugar is high, I have a dreadful thirst, horrible headache, terrible fatigue and nausea. When I’m very high and have ketones, I have to constantly monitor my blood sugar to avoid diabetic ketoacidosis, which if untreated can lead to very serious complications, even death.

It’s funny, though, that whenever I meet someone else living with type 1 diabetes, I’m instantly drawn to them by this unseen powerful connection of emotion and understanding. It feels good to know that the person next to you can feel the same emotions, and understand them without uttering a word.

I never embraced my diabetes; I rejected it and neglected it. But after twenty years, and coming face to face with my life and what I want from it, asking myself where I see myself in another twenty years, I’ve come to realize that it is best to see eye to eye with diabetes. Try to understand each other. You see, diabetes is like having another person living inside you, only that the minute you slack, this person is ready to hurt you and cause you so much damage. But instead of fighting this entity, you should make peace with it. Learn to walk side by side instead of competing. It’s very difficult - I can guarantee that; there will be heartache, anger, hurt, almost defeat. But I can also guarantee that once you make peace with diabetes, you make peace with yourself. It’s ok to be angry, it’s ok to be sad, it’s ok to feel defeated - but you are not. What did not kill you definitely made you stronger, stronger than life itself, and anything that comes your way, you are strong enough to handle. You see, diabetes did deprive me of many things - or I think I deprived myself of them by not accepting the disease - but it never deprived me of love, friends, family, happiness, sadness, frustration, anger. It never deprived me of the emotions that make me feel alive.

I never thought, not in a million years, that I would ever write something like this. Diabetes has made me who I am today and it has made me a better person. If someone offered to take it all away, I would beg them to do so, but the truth is that I would be lost, because diabetes is a huge part of my life. It made me who I am today. It does not define who I am, but it helped shape me into the woman I’ve become. I am a better person because of it. I am more compassionate than most, I am more understanding, I am more patient, I am more helpful, I feel more empathy than most. I am stronger than most. I am a better person than most.

So you see, it’s s a long road, full of hardships, but once you emerge from the depths of your abyss, you will emerge as a hero, as a war survivor. Your scars don’t represent your fears, wounds, hurts, but they will represent your courage, bravery and heart. So if you are on the verge of giving up, I beg of you - don’t. We are warriors and we don’t give ourselves as much credit as we should. Recently I went for an appointment with a Rheumatologist as I’ve been having terrible pains in my joints. He said something to me that stuck with me. He told me: “You are a very brave woman, don’t ever knock yourself down. You give yourself multiple daily injections to stay alive - you are a very brave woman”. I thought about what he had said and replied: “Thank you”, for I am brave, and so are you. We are warriors who fight daily and never give up, because we do not have the luxury of giving up. As soon as we do, we are as good as dead. Without hope, we are as good as dead. But when you hit that all-time low, you can only go up.

I was a very bitter, angry little girl who hated the world and everyone around me. I was so full of anger that I missed out a lot in life. But thanks to the right help, therapy, medication, dedication and will power to change my outlook on life, I can now say that I am at last at peace with my diabetes after many years. I enjoy life and every single day, and I am happy. I have actually blossomed as a person. I have had my fair share of sadness when it comes to diabetes. But one thing I can say is that you don’t necessarily have to be strong to feel strong. Focus on what matters, pursue that, and forget the rest. 

Embrace all of your feelings. They too shall pass - I can promise that. Life gets better. Life is beautiful!”