How can you live relaxed and consciously with illness and uncertain health? Lottie van Starkenburg has various chronic conditions and wrote the book ‘My friend Damocles’. ‘Being ill not only causes misery, it also has positive aspects.’
Cindy Cloin20 november 2023, 20:41
Unfortunately, the interview appointment with Lottie van Starkenburg has to be rescheduled. She is sick. Some kind of cold virus that someone would normally get rid of within a few days. But for Van Starkenburg it is exciting. Such a virus can cause her entire immune system to run wild, meaning her recovery can sometimes take up to months.
“This is exactly what I always have to take into account. That’s how my life goes,” Van Starkenburg puts things into perspective when a week later I manage to speak to her about her book My Friend Damocles about living with uncertain health. The biggest ‘cloud’ in her head has now lifted, although her body thinks differently. She can’t walk to the end of the street yet. “Still, I think it won’t be too bad this time.”
Van Starkenburg (45), a PhD astronomer, has been dealing with serious health problems for almost a quarter of a century. They first arose during her studies. She is tired. Better said: exhausted. The GP thinks it is graduation stress. An absurd idea, according to Van Starkenburg himself. She enjoys her studies and life. She demands that things be sorted out. Numerous investigations followed, abnormal results (and then again not). Ultimately, it turns out that her thyroid gland is not working properly because her immune system attacks it due to a hereditary predisposition to autoimmune diseases. She has now been living with her poor health and periods of (seriously) illness for more than twenty years.
Calm and confident
The reason for writing a book about this was the corona pandemic. “I was very worried at first, just like everyone else. What could this virus do to me? But I also noticed that I relaxed again quite quickly, while people around me continued to be very worried. I found that interesting. Within a few weeks it became clear to me that I did not have to worry about dying from corona. I’m young enough, and don’t have heart or lung disease. That’s no guarantee, but I can also get hit by a bus. Of course I look before I cross a street, but other than that I don’t worry about that. Of course, I was a top candidate for long-term complaints. Still, I knew how to deal with that threat. Apparently my illness has changed me and I approach life calmly and confidently. I started investigating that further. How do other people who are sick do that? What choices do you make when the proverbial sword of Damocles hangs over your head?”
In the book, in addition to her own experiences, she tells the story of sixteen people who are dealing with illness and uncertain health. For example, she speaks to someone with epilepsy and someone with cancer. They are stories about sadness, fear and living loss, but also about love, courage and resilience.
How do you navigate between burying your head in the sand and staring like a rabbit into the headlights? You are not provided with a manual and such a conversation is hardly or not even had in the doctor’s consultation room, according to Van Starkenburg. And the question becomes even more important when you consider that the uncertainty of a medical risk affects your entire life. “For example, it leads to concerns about work and income, about love relationships and friendships. It also raises questions about your identity if at a certain point you can no longer do what was always so obvious to you.”
Big and small questions
Living for a long time with a chronic condition or hereditary risks means uncertainty that affects your entire existence, in countless large and small questions. Some people learn to deal with this more easily than others. Van Starkenburg mentions various forms of uncertainty. Will I receive good care, with the right medications? Can I take care of my own household and income? Who wants a relationship with someone who is chronically ill? One person finds meaning in his condition, for another it is pointless suffering, or even an obstacle to leading a meaningful existence. It does not make it obvious for everyone to be able to live a relaxed life when an illness presents itself.
Van Starkenburg sees similarities in the stories of the people she spoke to. “It helps to maintain your individuality by daring to make idiosyncratic choices. And without a strong sense of self-esteem and self-confidence, it will not work. As Anna, one of the people I spoke to, puts it: self-confidence takes on a new meaning: staying true to yourself. Many people say when they are sick: I have lost confidence in my body. The opposite happened to me. It strengthened my confidence in my body. It told me over and over again what was going on and what it needed.”
It is oppressive to know what awaits you, but on the other hand it can be liberating. “It makes it possible to focus on what is really important to you. It seems that constant smaller reminders of mortality open the door for some people to become more true to themselves during their lives. It is precisely because of the knowledge that a long, healthy life cannot be taken for granted that people experience the freedom to choose what suits them.”
Brain disorder
What Van Starkenburg also sees is that it does not work for everyone to know more about risks or opportunities. One wants to know everything, the other doesn’t. She herself is told that Huntington’s disease runs in her family, a hereditary brain disorder that irreversibly leads to death. Anyone who carries the gene will become ill. The chance that she has the gene is 25 percent. “That’s living with a knife to your throat, it couldn’t be more gruesome. But the longer I live with uncertain health, the more comfortable I am with not knowing things exactly. Illness and death are part of life. I’ll find out the details when the time comes. I don’t want to know if I’ll get Huntington’s. But if I benefit from certain knowledge about my health, or can gain a lot from it in the future, then I do want to know.”
Loesje’s card with ‘Life is the plural of courage’ has stood on Van Starkenburg’s desk for years. “I think I succeeded quite well. If I had let myself be guided by everything that could have gone wrong, I would not have had a husband, children or job. The more I had to fear, the less afraid I became. I am more relaxed. Not only when it comes to health or illness, but also about work and income, about delayed international trains or problems surrounding my children.”
Living with uncertain health always means playing with control and surrender. “What is possible in the situation I find myself in now? What is helpful? Sometimes it is control, sometimes it is surrender. For example, now that I have that virus among my members. I have to surrender to that. And that’s really not always fun. At the same time, my life with all the conditions has created my work. I enjoy what I do immensely. The responses I receive from readers, listeners and participants in workshops and training confirm that I can make a difference. I can’t imagine a more beautiful job. I have my priorities very clear and I live by them.”
The sword of Damocles helped her with that. But is her life also better than if she had not been ill? “I have no idea what my life would have been like without illness. So I can’t say with certainty that living with the Sword of Damocles has made my life better. In any case, it has made my life different. And I wouldn’t want any other life.”
Also read:
‘You will have to learn to live with it’, what if the doctor’s words make you sick?
What a doctor says to you, and how, matters, as Sofie Rozendaal experienced. You can actually get sick from using the wrong words. How does that work?
2023-11-20 19:41:01
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