My name is Wendy Roodhooft. I’m 32 years old and I live in Belgium, Europe.
I was diagnosed with AS just about two years ago, and have the diagnose of Crohn’s disease for about 6 years.
Since the diagnose my health has been worse, i have been in a wheelchair for a while but now with the TNF-medication I can walk again without a cane!
The most trouble I have is with the people that do not understand the disease.. Yes, I do look fine (I’m awake at 4 every morning because of the pain, I have time to make sure I look fine! 😉 ) and I do tend to go to musicfestivals, it hurst, alot, I’ll never let anyone see how much it hurts, and if you see I’m hurting, then it is really bad..
My husband is the best, he tries to understand how I feel, allthough it’s not easy and I’ll never show just how much it hurts.
There are days when picking up a knife or a fork is too painfull (my hands are affected) and going to work is a real effort since my hands are the things I use most at my job (I’m an IT-specialist)
Sometimes the only thing that keeps me going is my family and the love I have for them.
I have no hobbies anymore, I was a sportsfanatic, gamingfanatic, everything that was fun and took alot of energy, but not anymore. The only thing I have is music.. And allthough going to a festival almost kills me ( 🙂 ) it’s one of the things I do look forward too.. One of the things I’m trying to keep on doing from my ‘old’ life. The music just lifts my spirits.
According to a specialist last week I’m trying to be too strong.. He told me that it is not right to hide away the pain.
But it’s one of the things I have left.. My pride in not showing how much pain I’m in. In my opinion it serves no purpose to let my family and friends know how much pain I have, god knows, they might ‘pitty’ me and that is one of the things I fear most.. ‘pitty’ ..
I was always ‘strong’ and yes, I do take pride in that. I don’t want to lock myself away because of this disease. I will not let this horrible disease let me be locked up and not live life to the max! I’ll try to live my life the way I want (with some adjustments as you, my fellow AS’ers, will all know.. :))
I want to thank websites like Faces of AS for raising awareness for this horrible disease.
We don’t look sick, but you can be damn sure we are all hurting like hell!