BVMED, the German national medical devices association, has initiated a campaign to raise awareness about medical devices and empowering patients to be body proud, despite having a medical device. We have translated extracts of Elke’s story as part of European MedTech Week. To view all the stories, click here.
Why are you supporting the “Body pride” campaign?
I was immediately convinced by the “Body pride” title. It’s a beautiful concept that I fully support. I acquainted myself with the campaign and I thought, “That suits me perfectly!” I endorse it wholeheartedly.
When did you receive your diabetes diagnosis?
In 1996. I was 13 years old when I received my Type 1 diabetes diagnosis. It’s a chronic disease that I will have my whole life. I take “imported” insulin every day.
How did the diabetes make itself noticeable then?
I was very thirsty, always tired and found it difficult to concentrate. It was then that my parents took me to our family doctor and he performed a blood glucose test. We knew what it was when there was a very high result.
How did you deal with the diagnosis?
Initially, diabetes was completely new to me. I simply didn’t want to be ill and preferred to forget about the diagnosis. It was also not externally apparent.
Did your lifestyle change as a consequence of the diagnosis?
Initially, there was a difficult period because I found myself in a dilemma – I had to learn to understand the disease, but I didn’t wish to do so. Suddenly you have to consider everything you eat and calculate the carbohydrate content exactly. I was often in a state of despair and thought that I wouldn’t be able to overcome it. I didn’t want to hear from the doctors; I thought, ‘what would they know about the practical life of a young diabetic?’ However, at some stage I started thinking about it again and concluded that there was no point in fighting it.
Gradually I took notice of what I was eating and especially why I was doing so. This is quite exciting! In my opinion, healthy eating habits begin in the mind. Today I’m aware of what I eat, because a balanced diet and diabetes are inter-related. You have to consider what you eat constantly. Food then takes on a special significance.
How did you manage to accept your illness better in the course of time?
By addressing it more and more. I wanted to make the best out of the situation. It took a while, but I came to understand that the more intensively I dealt with diabetes, the better I could live with it. I would give this advice to anyone affected.
What does your diabetes treatment entail?
I need insulin several times a day. I had to administer the insulin injections myself at 13; it was a huge undertaking. I then used the so-called pens and that was a great relief. I had to have both pens on me the whole time and I would administer the long-acting insulin morning and evening, and the rapid-acting insulin into my stomach or thigh at each meal. I received my insulin pump last year.
Why did you decide on the insulin pump?
The pump is very helpful in maintaining a regular daily routine. With it I’m more independent as I require several insulin injections a day. The pump simply provides insulin independently and releases it automatically.
How does the pump work exactly?
The pump that I use consists of the pod that contains the insulin, and, together with a small control unit, it delivers the insulin directly onto the skin. The pod is connected by radio and thereby regulates insulin delivery without a disruptive tubing system.
How do you wear the pod?
I stick the pod where I want on my body, like a plaster. I mostly prefer the abdominal area, the upper arm or the thigh. A plastic cannula pierces the skin and delivers insulin at certain intervals throughout the day. This also provides for fewer blood glucose fluctuations. Beforehand a doctor sets the correct amount of insulin for each patient individually. When you want to eat, you just need to adjust the setting on the control panel and additional insulin is delivered.
Is the insertion of the cannula painful?
In earlier insulin pumps, there had been a needle but fortunately, there are plastic cannulae today. In some places, piercing may still be a little uncomfortable, however it is quickly forgotten. In any case, the cannula only needs to be replaced every two to three days.
What do you need to consider when wearing an insulin pump?
I wear the pump throughout the day and night. For example, when I’m taking the dog for a walk I simply carry the device in my trouser pocket. It’s not like before where the cannula had been connected to a tube, so I’m able to move freely. In recent years the pump has become increasingly easy to use. In my opinion it has improved greatly and has vastly improved my day-to-day experience.
What do you do professionally?
Since October last year I’ve been working in an Italian café.
What role has the insulin pump played in your working life?
I’ve managed to incorporate it into my working routine well although I realise that my job may be demanding. So I can accurately set the daily administration of insulin. It works fine now and I can face my daily working day without any problems.
How do you spend your free time?
Preferably with my boyfriend. I also like spending time with my dog and trips with my friends. Cooking and baking are my passions and I spend my summers mainly by the lake.
Are there any areas where you feel that you feel that your illness restricts you?
No, actually not at all. They told me once that I could never become a pilot; although I’d never considered that! I don’t have any dietary problems either, I can basically eat anything. I only need to calculate the contents of my food so that I can estimate my insulin requirement. But that now works perfectly. So I don’t actually feel any restrictions.
You have quite a few tattoos. What do they mean to you?
For me, tattoos are art on your skin. I love these images and so I love my colourful body more. I had my first tattoo when I was 16 years old. I’ve added a lot more since. They simply belong to me, as does my diabetes. I wouldn’t be the same without them. Obviously these require a certain openness: Everyone can see my tattoos, and many see this as controversial. However, that is their opinion and doesn’t concern me any more.
As a diabetic do you have any considerations when having a tattoo made?
Many tattoo artists consider tattooing diabetics as problematical. Due to the illness, wounds may not heal as well. Fortunately I haven’t experienced this and everything heals fine. All my tattoo artists are aware that I’m diabetic. One of them is a diabetic himself.
Do you still find it difficult to speak about your illness sometimes?
No, not at all. It’s become absolutely normal for me. Previously, I could never have imagined that I could be so open about my diabetes. I’ve learned to deal with it. All my friends, acquaintances and my family are aware of this. I no longer conceal my disease and I acknowledge it in public. Back then, when I received my diagnosis, diabetes tended to be a taboo topic. Nobody wanted to hear about it and deal with it. This has changed, and today’s attitudes are different.Nevertheless, there are still those who are shocked and want to teach me that diabetics shouldn’t eat anything sweet. For example, they tell me crazy stories about their grandmother who was also diabetic and became blind.
Your website “Simply Sugar” also initiated your move into the public arena. Why did you choose to share your experiences in this way?
I’ve met many diabetics who were also been ashamed of their illness, and who hadn’t wanted to talk about it or who couldn’t deal with their diagnosis. So they experienced problems in their environment because no-one knew what was wrong. I then thought to myself that I‘d take the plunge and launch the website. That happened on 21 January 2014, exactly 18 years after my diabetes diagnosis.
How was your website received?
100 percent positively! After lots of feedback I managed to give those similarly affected the impetus to think about how they dealt with their diabetes. That’s a wonderful feeling! I don’t want to draw up rules for anyone, but merely show how one can live a good life with this disease. Having exchanges with others who were affected was important to me. I didn’t know many people with diabetes before I set up my website. “Simply sugar” suddenly changed that. This helped me to find new, interesting and amazing people who were also affected by diabetes. I would never have got to know them without the website.
What role does diabetes play in your future plans?
It‘s natural for me that I plan my future with my illness in mind. That’s me; diabetes and the insulin pump are part and parcel of me! It took a while, but thank God, I’ve managed to accept the illness as a part of me.How would you finish this sentence: I‘m proud of my body because…?… I like it just the way it is.