October 28, 2020

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Spotlight: Speaker and author on life with type 1 diabetes Loes Heijmans

Spotlight: Speaker and author on life with type 1 diabetes Loes Heijmans

Extreme thirst, a lot of urination and very tired, these were the symptoms that Loes Heijmans had when she was in Spain at the age of twenty for her internship. She thought I’d worked hard and partyed, I’m going to get through this, I’m going to rest at home later. When she returned home, she was diagnosed with type 1 diabetes after a visit to her GP. Since then, she has made her work out of her illness.

She was always the healthy Scion in the family and had never been to the hospital. “I never had anything and then suddenly you are chronically ill. Type 1 diabetes is the type that never passes away and can get it even at a young age. My pancreas does not produce insulin. Suddenly you have to stab your finger again and six times a day and put a syringe in your stomach. That will do you something. I got an explanation in the hospital about how to do this and what reactions you can get. With a bag full of stuff I was sent home and that same evening I put a syringe in my stomach for the first time.”

42 factors that affect your blood sugar

Loes has been living with diabetes for 16 years. The biggest adjustment for her is that she has to think about everything she does. Doing something spontaneous is no longer in it. “Many people think that eating alone affects you, but there are 42 factors that affect your blood sugar. So I’m watching not only what I eat, but also what I’m going to do next. When I go for a walk after dinner, I have to take that into account. But also an important conversation that gives me stress, hot weather, hormones, a pregnancy, everything plays a role.”

She has written two books about her illness. She wrote her first book in 2015, Give me diabetes. It is a diary in which she describes her life with diabetes, from the moment she was diagnosed and the following ten years. “In my book, I describe events from my life in which diabetes played a role, such as the time we went on holiday in America. We were on a road trip and my insulin pump had failed. I suddenly had to buy insulin in Las Vegas. In the book I also describe how I got the green light. If you want to get pregnant with type 1 diabetes, you need to get the green light from the internist. This means that your glucose level must be below a certain level. If they are not stable or higher, this can have consequences for the baby’s development.”

Two healthy children

In her second book Give me diabetes… and a baby, she writes about pregnancy, childbirth and motherhood with type 1 diabetes. “Of course, if you have a desire to have a child, you should discuss it first with your own husband and then with the internist. I have a glucose sensor that you apply to your body and then measure the glucose under the skin. That’s why I didn’t have to stab my finger anymore. You will see on one device all the time what your glucose levels are. This gives much more insight that these eight snapshots per day with a finger tip. For example, you can see exactly what a fatty meal does with your glucose, or what influence sports has. With this sensor, I got my values under control within nine months, for which I had done my best for ten years. After these nine months we had the green light and after two miscarriages the pregnancy went well. We now have two healthy children aged two and four.

She has learned that the owner wins, that giving up is not an option and that nothing in life is taken for granted. “Bringing a healthy child into the world is and remains a miracle. In our case, it has asked us to do something, that is, to keep these values under control. It was a very hard job for me. If they rocked a bit before, I’d think, well, okay. But on the way to this pregnancy it must be good, otherwise you will not get the green light. And if you are pregnant, you also have this responsibility for the baby. If I had too high a value, I would be worried. When I’m so bad, how does my baby feel? Not much is known about this yet. You know that too high values can be harmful in the first few months. It caused a lot of stress and anxiety and half a year after pregnancy I ended up in depression. I had everything, but I was still sad. With the help of a good psychologist, I came out after a year. I also started to do meditation and mindfulness. If I’m not doing well, I’ll meditate to stay close to myself.”

“Actually, I can’t do anything closer to myself than that”

After working as a wedding planner for 11 years and running her own business, she has been focusing on her diabetes work since this year. After writing her first book, she was increasingly asked to speak for caregivers. “I wrote the book as a kind of workmanship for myself and thought: family and friends must love to read it. In the first year, however, I sold 5,000 copies. I have received many answers from people who have recognized themselves in my story. They no longer felt alone by reading. Nurses also read my book, which makes them better understand their patients. All these reactions gave me a positive connection with my illness. Before, I fought against it. After my book, I found that I could help other people. In 2017 I started making Diabetes TV for the Diabetes Fund and in 2018 my second book was published. Actually, I can’t do anything closer to myself than that: tell my story and tell the story of others. This gives caregivers a better understanding of the lives of their patients, who feel more recognized by my story.”

During the suspension came the idea for a podcast. She had been told before: Don’t start a podcast, but she didn’t know where time was going to come from. And then came the corona and there was a line in her calendar. “That’s when I knew it was time to start the Diabetes podcast. Once every two weeks there is a new episode online in which I interview people or tell them something for themselves. In the future, I will also create sponsored podcasts where companies can talk about new insulin pump systems, for example. I think it’s a very nice medium. When I listen myself, I really feel like I can sit at the kitchen table and listen. You can really tell a story and go into depth during an interview. The big advantage of a podcast is that you have the time and can really respond to a topic.”

“You’re still having as much fun as you were before you had diabetes”

The work Loes is now doing thanks to her diabetes. ‘I’ve been living without diabetes for 20 years, then you know what it’s like. It was much easier. In the years immediately after the diagnosis, I sometimes thought I was a much funnier person before I had diabetes, much more spontaneous and simpler. Now I see it differently, because if I hadn’t been diagnosed, I wouldn’t be doing what I love most: presenting television and podcasts and raising awareness, especially the need for such a sensor for anyone with type 1 diabetes for a better quality of life. Now that word will be refunded. My husband knew me before my diabetes, I’ve known him since I was 17. He always says, “You’re still as sweet as you were before you had diabetes.” My children don’t know better, they grow up with it. Except Mum.” And when my youngest asks if all the mums have such a pump, the elder replies, “No, only the hard mums have that.”

Hear Here the podcast of guest editor Mirjam Hegger with Loes Heijmans.