We’re always fascinated to connect with fellow diabetics living all around the world who are doing amazing things. That’s the point of our Global Diabetes series, highlighting different perspectives from around the globe.
Recently, we heard from another young diabetes leader living in a far-away land: Wojciech Zając, a Polish college student studying at two different universities in Poland, who’s been living with type 1 for about a decade now.
He’s recently found his calling as a D-advocate through the International Diabetes Federation’s Young Leaders in Diabetes program, and has been working to spread awareness and help PWDs in need in Poland and beyond.
A Guest Post by Wojciech Zając
Hi, I’m Wojciech from Poland and I am 21 years old. For most of my life, I lived in Koszalin near the Baltic Sea, but now I live at the other side of Poland, in Cracow (the ancient capital city of Poland, and it is such an awesome city that you have to visit!). I study Mechatronics at AGH – University of Science and Technology and Cognitive Science at Jagiellonian University, and hope to merge them together to find a new way of thinking and solving problems concerning diabetes.
My story with diabetes started with quite a shock. No one in my family had ever had diabetes – neither my father’s side nor mother’s – and I always thought diabetes was a genetic thing. That’s what struck us. It was 13 February 2004, Friday the 13th to be exact (and no, I was never superstitious, although there was a time I thought that day was something ‘bad’ that happened to me – I’m not so sure anymore). I was a 10-year-old boy, confused by what was happening, with my closest family sitting next to my hospital bed, in tears. At that time I didn’t understand the situation well, but from reactions of my relatives I knew I should be feeling sorrow, very great sorrow.
And so began the hardest six years of my life because of depression and guilt that I was such a burden to my parents, and feelings of social rejection and discrimination. This was my life until I rose to the challenge and decided to live happily with that lifelong girl of mine, diabetes.
The word ‘diabetes’ in Polish is cukrzyca (derived from the word cukier meaning sugar). It is a feminine word, which is why many people like to call it a sweet girlfriend, a lifelong companion. I wrote about “my girl” diabetes in one of my poems later in life.
I have been using an insulin pump almost constantly since my diagnosis and I use a Continuous Glucose Monitoring (CGM) system occasionally for adjusting my insulin dose.
My brother and sister were too young to remember a time before I was diagnosed with T1D (to be honest, I don’t even remember it well). To them it was a natural part of me. I won’t forget my little brother, when he was about 2 years old, going around the house with a banana in his hand saying not ‘banana’ but ‘3 carb units’ over and over again. Diabetes was a part of my whole family.
The situation at school was more complex. Because of the poor awareness about diabetes I was able to cheat (when I wasn’t well prepared for the class I pretended that I was suffering hypoglycemia and I was sent to the nurse, while in fact I was feeling alright). On the other hand, there were not very many people I could trust. I’m not sure how I appeared to my classmates after I was diagnosed because I was so depressed and focused on myself fighting with the disease that I am not sure which memories are real. I felt like an outsider because I was incredibly shy and felt like I could not live a normal life like everyone else.
In every school I attended, all the way through high school, I gave lectures on diabetes, about how I cope with it, the proper diet and how people around me could help in an emergency situation. After that I felt somewhat safer. It was actually helpful because some of those emergency situations occurred in high school.
The discrimination is real here. Schools don’t want children to check their BG or inject in classroom, and they are usually sent to nurse but not every school has its own nurse and if it does she is available just 2-3 days per week. So children with diabetes check their BG and take insulin in class, PE teachers ask for annual exemption from classes, and sometimes schools even ask for personal homeschooling.
I believe that education about diabetes in schools in Poland has not been updated properly with the changing of the times. We think differently now, so the education system should also be different. My diabetes education consisted of the following types of statements:
I MUST take care of myself by managing my blood glucose levels, blood pressure, weight, diet, and exercise or I WILL suffer from neuropathy, nephropathy, retinopathy, epilepsy, heart and brain strokes, atherosclerosis, along with limb amputation.
However, if you take care of yourself, you will probably live longer. And believe me, this one small piece of hope is lost within all those ‘must or else’ statements. I received no examples of people living normally or doing great things with diabetes. There was no positive approach. This is probably why it took me so long to accept my diabetes.
Poland and Diabetes: the Bigger Picture
After diagnosis, a person with diabetes has to see diabetes specialist at least one time per week. Children have an appointment every 6-8 weeks depending on how far from clinic they live, and adults go 1-3 times per year. During appointments, you see an educator first for the basics: downloading data from insulin pump and glucometer, blood pressure, height, weight measurements, basic instructions about glucometer and pump use. Then you meet with the diabetes specialist for an analysis that includes HbA1c measurement, but there is unfortunately no foot examination.
This is mainly how it looks in my region for diabetes care, but generally it is true that the diabetes care for children is much better than for adults.
Having diabetes allows you to apply for a disability card, but complications with the health system lead us to lack free insulin. Poland is one of 5 countries in the IDF European region, along with Denmark, Faroe Islands, Iceland, Israel and Spain, that isn’t provided with free insulin. Test strips and equipment for insulin pumps are not free either. One would think that the fact that insulin is a lifesaving drug should be enough to make a change. There are regulations in Poland that up to a certain amount a person should not have to pay full price. If you need more than you are allocated you have to pay for it out of pocket with no refund. The CGM sensors are not reimbursed and cost quite a lot. Many people fear running out of blood glucose testing strips so only check their blood sugar 2-3 times a day (or less), despite the fact that more BG checks means better control of diabetes. However, the situation is slowly improving.
There are some access problems which I think are significant. In most pharmacies there is no insulin. You can order it, but if you are in urgent need there is no way to get it. There is also a problem with glucose products for hypoglycemia. In pharmacies you can usually find glucose powder, but rarely glucose gels and generally no glucose tablets. Of course you can order and buy them online but I think availability in pharmacies would be better.
The technology access is sufficient. We can get pumps, CGM systems (although it is expensive) and glucometers, although only certain models are available.
As to education and social awareness, I will say many times that it’s not a regional problem but one on a global scale. It is essential that people understand what it is really like to live with diabetes. Teaching basic principles could actually help other people because it involves the healthy lifestyle rules.
I think it’s important to note that other people’s help is vital. I was raised with thinking ‘help others but don’t expect any help from them.’ I was told to learn how to cope with almost every situation by myself when there is no one around. Poles are generally closed people, suspicious and envious, not very happy in life, but not everybody is like that. If you look closer there are people who want to help; they just don’t know how. Even people who do not really know about diabetes (especially type 1 diabetes) can help you to help yourself if you give them the appropriate tools and simple hints.
The community, even the medical community, are not educated well enough in Poland. If you are diagnosed as a young adult or adult you will not receive adequate education or treatment. You may also be treated like you know nothing, even if you have been living with diabetes for a dozen years.
Another example showing why we need more awareness of diabetes: last year a national newspaper (not a simple tabloid) published an article about how people with diabetes are selling the insulin pumps which they received from National Health Fund (which is in fact forbidden) to get rich. It created a general view of people with diabetes as crooks. It doesn’t matter that it was probably just one incident and probably not to get rich but to survive. For many people, living with diabetes is more than expensive. A nation with about 3 million people with diabetes should be provided with new research results and should be motivated to apply new restrictions to prevent the growth of the epidemic instead of reading unprofessional articles. But, enough complaining! We Poles really love to complain.
My Diabetes Advocacy
My advocacy work started with three nations (Croatia, Poland, Spain) through a summer camp in Madrid in 2012, where I was one of the Polish leaders. That’s where I met awesome people working for the diabetes cause – and that’s where I discovered that I wanted to do the same. Since then I’ve led lectures and practice trainings during association meetings in Koszalin. I have done radio interviews, my articles were published at MojaCukrzyca.org (the leading Polish website about diabetes), and I’ve organized a bike ride merging it with the European Film Festival. I also received a social educator in diabetes certificate and, most recently, I became part of the IDF Young Leaders in Diabetes program where I met so many awesome people from all over the world.
Last year, a social campaign called ‘Żyję, bo biorę’ (translation: I live because I take drugs) was launched. It’s focused on raising social awareness about diabetes problems. The campaign, with wordplay slogans referring to drug or sexual abuse as well as addiction to insulin, was almost entirely developed by finishing high school students and young people with diabetes. It is the first campaign of this kind and I am glad I had an opportunity to help them. The road billboards, TV spots and website ads invited people to visit the campaign site, where you can find a lot of useful information about diabetes (e.g. what it is, how to help people) in the form of quizzes and stories of young people with diabetes. There will be an English version of this soon.
Finally, I want to express that despite having T1D, I enjoy my life. I study topics I really like, I run long distances (although I’m not a marathon runner, yet), I attend parties, travel, and I have played guitar in a rock band. I am really lucky that I was born in such a great family and I am surrounded with such kind people. Not everyone has the comfort that I do, which is why I believe that the diabetes associations and work I do on diabetes projects is so important to reach the people in need.
Thanks, Wojciech! Can’t wait to see what you end up adding to our strong and always-growing community of diabetes advocates.