LIVING WITH DIABETES

World Diabetes Day is every year on November 14, first created in 1991 by the International Diabetes Foundation and the World Health Organization (WHO). Diabetes is a chronic disease where the pancreas doesn’t produce enough insulin if any at all. People living with diabetes face a number of challenges, and education is vital.

We hear from two Diana Award recipients about their experience of living with Type I Diabetes, and the work they are doing to help raise awareness and educate others about the disease.

Diabetes. What is it to a person who has it?

Rohan: I could give you a model answer that my doctors have recited to me, it is ‘when the pancreas does not produce insulin’. Scientifically, yes that is correct. Empathetically, not quite. This is my take on it: It is having a lion as an unwanted pet. The lion is diabetes. At first it is very frightening and can leave you extremely stressed and desperate for someone to just take it away. After realising it is with you no matter what, you try to respond to its needs. You have to respect it, take time over it. It can mentally drain you, but you must not give up. You will have rebellious phases where you question it, only making it act up more. But it is not leaving you. After giving it deep thought, you decide to make the most of it. You use it to open doors. You act as a role model on how to tame the mighty beast. You must never let to defeat you.

Adriana: Many wouldn’t consider Type I Diabetes as a disability. But it is a disability to me. The Cambridge English Dictionary defines disability as an, ’illness, injury, or condition that makes it difficult for someone to do the things that other people do’. Although Type I Diabetics may look, act, and do the same things as everybody else, we’re actually having to make decisions that could mean life or death. We must be in touch with our bodies and always be alert. We have to know how we feel when our blood sugar levels go too high or too low. We have to do things other people don’t even think or worry about, like waking up in the middle of the night to drink a glass of orange juice so that you don’t go into a coma or die from low blood sugar. It is a tremendous amount of work and has a big impact on our lifestyle.

How as Diabetes affected you?

Rohan: Unfortunately, I let it rule my life for over ten years. I could make a list filling up a page of all the negative thoughts I had about diabetes but that is not important. What is important is the realisation I had. I would choose to not have it, but now I do not see it as a weakness, more a way of life. Having Diabetes has taught me resilience, responsibility and overall mental strength. Diabetes has taught me from a very early age to get straight back up if you fall down I have had to be responsible to allow me to do activities without my parents’ immediate reach such as overnight stays at friends’ house and trips abroad with the school.

Yes, I have diabetes and have had it since I was 18 months old. But diabetes does not define me. It took me many years to realise this. It is always there; I am reminded of it every day. But you can look at it two ways. You can either let it suppress you, or realise you have it and get on with your life and worry about more important things.

My experience has opened doors for me to allow me to spread this message. I am now a proud Diabetes UK volunteer and I am also part of the NICE Diabetes Update Guidelines Committee. I volunteer for Diabetes UK to show no one should feel like a social outcast because of their condition. I volunteer to show young people that they are not the only ones and people like me have gone through life feeling the same way they feel and have come out stronger, realising it is not a weakness. I will repeat, Diabetes does not define anyone.

Adriana: Instead of having my pancreas take care of me, I have to take care of my pancreas. Not only do I have to inject myself with insulin up to 15 times a day, but I need to check my blood glucose levels regularly, even throughout the night. There are times when my levels are too high or too low, so I have to inject more insulin or eat sugar – yes, we have to eat sugar to stay alive. This often prevents me from doing the things I want to do.

There is so much more to being a Type I Diabetic and I feel that we are often misunderstood because our disability isn’t always visible. We often get confused with Type II Diabetics and that can be frustrating because of its association with poor diet. I have been asked questions like, “Did you eat too much sugar as a child?”, or “But you aren’t fat?”. Don’t get me wrong, I don’t mind being asked questions about my disease, but I would like to educate people and raise awareness of this hidden disability and its impact on daily life.

Sometimes I have bad days where I hate having to live with Type I Diabetes. On other days I am happy that it happened to me and not someone I love because I feel strong enough to handle the disease, while maybe my friends or sister might not. It’s been five and a half years since my diagnosis and I have managed my diabetes in four different countries: Spain, South Korea, the US, and the UK. In each country I have had to learn to adapt and change my lifestyle. I have even managed to turn this disability into something positive by helping and educating others.

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What about a cure?

Rohan: There are advancements regularly in this research but sadly no cure has been established yet. However, my dad believes that there will be a cure in my lifetime. This continues to give me hope and I know that scientific breakthroughs are happening. Honestly, life is too short to spend time moping around asking unanswerable questions like “Why me?”. Focus on the positives and keep that lion caged.

Adriana: Since my diagnosis, I have been raising funds for JDRF (Juvenile Diabetes Research Foundation) to fund type 1 Diabetes research to improve lives and one day eradicate the condition for good. Every step brings us closer to a better future. Some of the best advice I’ve been given was, “don’t let Diabetes control you, you control the Diabetes”. I like to think that becoming diabetic is a disability that has made me stronger. Type I Diabetes is simply a part of who I am.

Rohan received his Diana Award for his work supporting others with Type I Diabetes in school and volunteers with Diabetes Scotland, a cause close to his heart. He has been the driving force behind his school’s fundraising week, sharing his story to inspire support for Diabetes UK. Rohan is also a lay member on the ‘NICE Diabetes Update Guideline Committee’, which considers new national guidelines for Diabetes care, providing vital patient input.

Four years ago, Adriana was diagnosed with Type I Diabetes. Since then she began a mission to raise funds and awareness to support the Juvenile Diabetes Research Foundation in its efforts to eradicate Type I Diabetes and its effects. The money Adriana has raised has funded ground-breaking research, ensuring those living with Type I Diabetes have access to the best treatments possible.

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