Keynote: Never judge a book by it’s cover

For many years I believed I had to hide the part of me suffering from an invisible chronic illness (because of my roots: Illness is not in our vocabulary, because I wanted to show strength, because of the people I lived with, …). When leaving home, I tried to be the perfect version of myself. Coming home, behind closed doors was the place to be  myself with my strengths and all of my weaknesses: tears, pain and fatigue. My days consisted of getting up early, facing urgency and diarrhea, preparing the kids for school, going to work for about 3 hours, lunch at my parents house, going home, a two hours sleep in bed or on the couch, facing urgency and diarrhea, getting kids from school, doing some housekeeping and preparing a meal, back on the couch and a night sleep. Going out in the weekend meant scheduling extra sleep and trying to put on my happy-face-mask, because I didn’t want to disappoint the people around me. It was a pretty lonely life in fact, where I disappointed myself all the time to please others. Everything was build around my illness although I still tried to deny it in every possible way. The more I tried to hide it, the more it was present in my life.

You can pretend to be strong for a very long time but …

The moment I had the courage to face my problems and sitting in the waiting room in the hospital, I was really afraid … because I thought the person in front of me would not believe my story, because he would ask where I had been al the time, because I had to confess that I had been so reluctant and stubborn, because of the examination that would follow, because of the uncertainty, … . I hoped that there would be some kind of treatment that would work immediately.

This wasn’t the case and …

I learned a lot about myself and about the people around me, I lost some friends along that way: they could no longer believe me because they didn’t know the ‘hidden’ reality I lived in all those years, they thought that a couple of hospital visits would get me a long-term solution …

But …

By being honest and sincere, I also met people who did believe in me, who took the time to listen to my story, my thoughts, my ambitions, … who gave me the space and the time to figure things out and that’s why I am standing here today: because I am much more than just the person with IBD, I am a person with a background, a knowledge, an opinion … And finally, I learned to continue my life, IBD included. The UC is still there all the time, we’re still working on a treatment that fits me and that can take control over the disease. My illness is still my biggest enemy, but an enemy I finally faced and tried to embrace towards personal growth. I picked myself up and continued my life, no longer laying on the couch every day. I still feel tired at night, and I still need to run for the toilet but I learned to love myself and to see what I am capable of. Turning the negatives into positives.

I am the one who needs to work towards change and growth, but it is no longer that lonely life I lived. I found the right people who believe in me and welcome me, completely, the one with IBD included. I am no longer my illness, I am the person living with a chronic illness but it defnitely does not define me anymore. Grateful for the people I met along the way who helped me figure this out.

Keynote door Inge tijdens een lezing in 2018: “never judge a book by it’s cover”

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