Facing the enemy

Writing down experiences …

A chronic illness like IBD is not only about physical struggle, it has many hidden psychological consequences too. During writing, I learned to know myself and found the answers to many questions in my head.

  • For many years I felt guilty for being the mum who’s always tired. Many mothers take their children to the swimming pool or amusement park, go out for a movie, organise birthday parties at home, … . I didn’t do this for many years and it felt like I was a bad mum not willing to sacrifice some of my time for my kids.
  • Although my husband and I have a fantastic relationship (We can talk about everything, we’re building on the same dream and support each other in the things we want to realise), I often felt guilty because I am the wife who’s tired in the evening, the woman who looks tired at the party, the one who needs to rest on holidays, the lady running to the toilet first thing in the morning instead of kissing her man good morning, … .
  • I worked at an office for about 8 years. When it came to ambition and absence at work, I was the colleague who disappointed her manager. I really dreamed about a certain career, but I had to give up on that because of fatigue and physical limits.
  • I’m blessed with so many people around me, but when it comes to going out, a dinner, a party, a tea-time moment, … I was the friend who cancelled plans because I wasn’t feeling fine or felt too tired.
  • When I had to see a physician or nurse, I was ashamed to be the patient with complaints. I always felt as if my illness wasn’t as bad as other patients. I always felt as if I was occupying their precious time.

Facing ‘the’ enemy: the first step in embracing yourself …

As I wrote down all these experiences and thoughts in my diary, I started to understand myself better. At first, it was some kind of relief. Writing down the things that I couldn’t speak out loud felt liberating. Secondly, I started to question the things I had written down. Was it the right perception? Were things exactly as I felt they were? Did I really disappoint my family and friends?

  • I am the mum who has chosen to stay at home for her little kids, the one making time to bring them to school and who creates a cosy home, the mother that is there to listen to the day-to-day stories and worries of her children.
  • I am the wife who supports her husband in his business (behind a strong man there’s a strong woman), the one who prepares a fresh meal after long days at work and the first to listen after a rough day.
  • I am the colleague who tries to create a happy atmosphere at work and who is always in for some pep talk when others feel frustrated or down.
  • I try to be an understanding friend by making time to listen and to help my friends and beloved ones. I pick up my phone day and night when someone is in need or asks for a helping hand.
  • I am a patient that comes to consultations with a smile on her face. I do not complain, and I try to be objective about my body issues.

Embracing ‘the’ enemy …

It isn’t easy to live with a chronic illness like IBD. Some days you feel like you can face it all, while other moments it’s even hard to get out of bed in the morning. I learned to enjoy the good times and to put into perspective the bad. When I look back over the past 20 years, I no longer feel frustration and sadness but strength and faith because I tried to turn the negative into positive.

Enemies are real energy consumers. It’s a relief the moment you are strong enough to face and embrace them …

Sharing is caring …

At the point that ulcerative colitis was dominating my life, I handed a diary to IBD nurse and friend, Liesbeth. At first I felt unhappy with the idea of sharing thoughts, feelings and personal information. However, I felt the need to share my way of coping with the day-to-day struggle physically as well as emotionally.  The feedback was overwhelming and heartwarming.

“I know everything about IBD In theory, but I have never felt what it’s like to deal with it every day. This kind of information is so worthwhile in terms of better understanding other patients and their families.”

In their shoes …

By far, one of the heaviest experiences we lived together, was accepting the #intheirshoes challenge last year. We spent two days together on an emotional rollercoaster of facing and embracing the consequences of living with IBD.

Today, on #worldIBDday, we look back to this experience with mixed feelings … and with gratitude for the connection, the understanding and our unique friendship.

Inge – 18/05/19


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