INTERVIEW – ‘The diabetic community feels like one, big family’
November has come to an end, as well as Diabetes Awareness Month. This year’s theme brings attention to access to diabetes care. In 2018, healthcare worker Ilse Faber (22) got diagnosed with diabetes type 1. With her Instagram account ‘diabetesmetils’, she wants to share her daily struggles and the silver lining of her disease. ‘It’s a life with ups and downs, just like my blood sugar level.’
Diagnosed at the age of 17, an eventful day to remember?
‘Definitely. I remember exactly what happened. A couple of days before my diagnosis I did not feel well: I had a headache, a dry mouth, had to urinate more often and felt really tired. Those are all symptoms of diabetes, which left me worried. My mom, who is a doctor, checked my blood sugar levels. The first time they turned out to be way too high, but the test strip turned out to be expired. The new test strip gave the exact same result. We went straight to the hospital where an internist took some blood tests. After waiting for a couple of hours, the final result came in: I indeed have diabetes.’
Type 2 is a more known disease. How did diagnosis ‘diabetes type 1’ affect you?
‘It was definitely a surprise. Most doctors assumed I had diabetes type 2, since I’m on the curvier side. Diabetes type 1 is known for making people lose weight pre-diagnosis. They thought it would all be fixed by changing my diet and after some time I would no longer have to depend on insulin. After two weeks of insulin treatment, I got a phone call telling me I actually have diabetes type 1. A life-changing difference. It shows those assumptions have consequences. Even though my situation is a bit rare, it can still happen.’
‘Even with the help of my pump, it’s still very time-consuming’
Diabetes type 1 & type 2: two worlds apart?
‘Diabetes type 1 is an autoimmune disease. Any insulin you make gets attacked by your body. There is no cure and I will have insulin treatment for the rest of my life. With diabetes type 2, the pancreas still makes insulin, there is still a way to turn your life around by changing your lifestyle. My body depends on artificial insulin. I have to inject myself with a diabetic pen or use my pump, which helps me manage.’
How did your life change after the diagnosis?
‘I spend a lot of time trying to find out how to take care of my body: how it reacts to eating too many carbohydrates and how much insulin I have to inject myself with. I now have a pump, which takes care of reading my blood sugar level. I keep it right beside me, in the pocket of my pants. I still need to check it every couple of hours, change the sensors once a week and have new injection sets every three days. It’s still very time-consuming.’
Dit bericht op Instagram bekijken
Was the diabetes injection pump an option or a must?
‘The injection pump is made to make the life of a diabetic easier. It depends on your hiAb c, which is your blood sugar level of the last three months. If your results are too high, it is recommended to get a pump. I still have a wish to have children, a pump is a great option to keep my blood sugar level regulated during the pregnancy.’
It’s an unknown device for a lot of people. Do you regularly get pump related questions?
‘Sometimes. One time, someone asked me if I work for television by seeing this strange device hanging on my bikini. When I’m walking around town, people often come up to me to ask what this black box is. I kindly explain it to them and sometimes let them press the sensors.’
‘At 17, I went through a teenage rebellion phase’
Dit bericht op Instagram bekijken
Did it affect your job as a healthcare worker?
‘I started my work as a healthcare worker in 2017. Since I got diagnosed in 2018, my body has already got used to irregular working schedules. I never experienced any differences.’
It all seems so obvious to you. Is there anyone who guided you through the whole process?
‘I didn’t get much guidance from the hospital. After the diagnosis, they kind of left me to my fate. Thankfully, I got my parents to count on. Since they are both active in the healthcare sector, it was easier for them to take care of me. Even though I went through my teenage rebellion phase (laughs) and didn’t want to listen all the time, I’m still grateful for their help and patience.’
‘Taking care of yourself is time-consuming: it is a 24/7 job’
November is Diabetes Awareness Month. How important is it for you to bring attention to diabetes?
‘Extremely important. I started my Instagram account with the determination to get rid of all the misconceptions. Most people don’t know what diabetes actually is and what impact it has on the life of many. If you ask someone what having diabetes is about, most answer that I’m not able to eat sugar. Then I ask myself: who are you to tell me what I can or cannot have? It genuinely frustrates me: no, diabetes has not only to do with what I can or cannot eat, it’s so much more than my food consumption. Taking care of yourself is a 24/7 job, and it’s time that people realize this.’
Dit bericht op Instagram bekijken
Are there any other misconceptions you want to get rid of?
‘Many. Just like I said, people assume it’s because we had too much of one particular thing: too much sugar, way too overweight. Diabetes type 1 can occur at any moment, at any time in your life. So before you judge, ask questions. I have no problem with explaining.’
You created a community with diabetesmetils. Do people spontaneously share their stories with you?
‘Most people ask for advice. Last week, a fifteen-year-old girl told me how she had no motivation to take care of herself. It’s quite difficult for me to find the right response. I did everything quite right from the beginning. Hearing stories like this makes me realize how different it can be for others. We are all going through this, it’s heartwarming to see how we all can support one another. It feels like we are one, big family.’
‘This disease will never go away, so it’s better to stay positive’
Is what we can see on Instagram different from the real-life Ilse?
‘With diabetesmetils, I can pour my heart out and write about the struggles I face on a daily basis. I can be more vulnerable towards the community I have created, they can actually understand what I’m going through. On my private account, I daily share pictures of myself or with friends, yet I do not open up to them about my journey with diabetes. There is a lack of understanding and actual empathy. If you don’t have the disease yourself, it’s extremely hard to actually understand what I’m going through.’
Your Instagram bio tells us ‘High and lows, my life is just like my blood sugar level’. Is this the way you perceive life?
‘Yes, I’ll always try to look at the bright side. There are days where life gets difficult, such as having sleepless nights because of hypos (my blood sugar level gets too low) and feeling sick the next day. This disease is a part of me and it will never go away. But it’s better to stay positive: I now have a pump and it’s making my life much better.’
December is here. How will you spend your holidays?
‘I’ll still have to work (laughs). I spent the holidays just like I did before my diagnosis: by doing and eating whatever I want, I’ll just have to inject more insulin. I won’t let diabetes control my life, especially not by the carbohydrates in meals.’
Text: Marie-Julie Van de Sijpe, final editor: Leïlani Duroyaume
Collage: Marie-Julie Van de Sijpe, images used: mohamed_hassan via Pixabay, Ilse Faber