My book and my story about living an inspiring life with chronic illness …
When I began writing my book “Sickeningly happy” (Very free translation of Ziekelijk gelukkig: succesvol leven met een chronische ziekte) I took my life after the diagnosis as a premise. A severe pneumonia in 1996 and a very slow recovery lead to a lupus diagnosis in 1998. My lung function had been greatly reduced. To this day my lungs are still my weak spot.
After a 2 year recovery phase on a large dose of steroids, I had to accept that my life had changed – I had to try to live with the Lupus diagnosis. I tried to cope by denying I was ill. The medication had made me feel better and gave me the idea I would be ok. I succeeded in this denial for 8 years. In 2006 the Lupus flared up big time with pericarditis and pleurisy at the same time. I went to a rehabilitation center for 6 months and was confronted with the facts: my life had severly changed and I never learned how to deal. Denying was no longer an option as I was bedridden and had lost my job through all this. The only choice I had left was to accept I was ill and learn to work with my body instead of against it. I dived into the process on paper. At first I was solely writing for myself: to give myself a manual for how to cope. But then doctors, nurses and other people I met through my illness said I should definately share with the world. I had already started blogging (in 2006) and in 2009 I found a publisher for my book.
The book is a practical guide to succesfull living with chronic illness. It shows how to deal with the feelings and emotions you’ll encounter in this process. I did some very thorough research and talked to doctors, therapists, caregivers and patients.
“A chronic illness is not something you ask for or something that enriches your life. It’s something you do not wish on anyone and if it happens to you, you just want to get rid of it. But this visitor is going to stay. And whether you accept this or not, it won’t go away. The more you fight it, the more complicated it’ll get and it’ll leave you tired with no energy for the fun things in life, is my experience.”
(Excerpt from book translated by me)
I have transformed my experiences and insights into a surprising book filled with practical information for fellow patients and their friends and family. I wrote the first Dutch book that specifically deals with auto immune disease and also informes about these illnesses. With this book, a dream came true for me: after I wasn’t able to work anymore in 2006 my world came tumbling down. Being able to work and doing something meaningful were very important to me. Now that I was home all day and mostly lying in bed, I felt useless and like I had failed in life.
From when I was a little girl I have always written stories. After I discovered that Social Work was not the perfect study for me, while I really enjoyed the psychology part and I read tons of psychology books, I heared about the possibility of studying Communications. It was here that I could do more with my love for writing. After getting my degree I started to work as a news editor and it was then that I told my colleagues, whatever would happen, I had only one dream left: getting a book published. I started writing lying in bed or on the couch in 2008 and I presented my book to the world on the Dutch lupus congress in May 2010, standing up, rather intoxicated by prednisone, but I did it. Living succesfully with a chronic illness is definately possible. And I am a living example of someone who is chronically ill and living an inspirational life.
Here’s an excerpt of my book in PDF in Dutch. It’s about learning how to say no:
Ziekelijk gelukkig – Leer nee zeggen