A.S. Face 0167: Wendy Roodhooft

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!

regards,

Wendy

Belgium, Europe


17 Responses to “A.S. Face 0167: Wendy Roodhooft”

  1. Dear Wendy,
    Thank you so much for sharing your story with us. Your story touched me deeply because it reminded me a lt about myself. I kept my illness to myself and tried to never allow anyone how difficult it was for me.
    That is one of the reasons, I started Faces of Ankylosing Spondylits, so we could take pride in how strong we are and in that strength band together to bring the “truth” about our lives out in the open. Thank you for being strong enough to be a part of that.
    Sincerely Cookie

  2. dag wendy, bedankt om je verhaal te delen. Nooit gedacht dat ik hier iemand van België zou zien opduiken! – ook AS & Crohn hier (al 20 jaar)!
    thx for sharing your story

  3. Welcome to ” Faces of Ankylosing Spondylitis” Wendy “RedHead”! I translated your last name, from Flemish-Dutch to English.
    You are a strong woman and by golly when you are having pain, it’s quite all right to show it. Our AS community online, have very understanding friends who also suffer from the same illness, and we can “vent” whenever we are in pain etc. If you can give your family and friends pamphlets on AS, they will be more than happy to know more about AS, and not pity you, because they may also someday face back pains etc. and not know what they have, so you’re educating them. I immediately gave all my friends and family these pamphlets available on ASAP, so that they know what I have. I had a niece that didn’t believe I was sick or in pain.
    I am glad to hear that you’re on a TNF blocker, and that it is working for you. Good luck with it, and just don’t be around people that are sick, because your TNF blocker will lower your immune system, so that you’re susceptible to all infections.
    Happy New Year 2012, Gelukkig Nieuw Jaar!!
    Hedy Francois

    p.s. We love Antwerpen, Belgie and their patate frites, mosselen etc.

  4. Thanks for sharing your story…..I too was a sports fanatic and very active, but now, I can barely walk across the parking lot to work without breathing hard. Stay strong and try to be positive. I don’t share my pain either– but I have one good friend I can share with and she helps me a lot.

  5. thanks for sharing your story with us Wendy. 🙂

  6. Hoi Wendy,

    Blij jouw verhaal hier te lezen. Ik vind het erg moedig dat je de pijn probeert te verbergen maar achteraf bekeken weet ik niet of dat zo goed is. Zelf slaagde ik er tot 2007 in om te doen alsof ik ‘normaal’ was maar het werd onmogelijk en er was weinig begrip van de omgeving. Er waren heel wat vernederingen te ondergaan, heel wat stappen achteruit te doen en het hooi dat ik altijd op mijn vork nam is allang gecomposteerd. Het is belangrijk dat je omgeving weet waar je mee worstelt. Succes !
    Groetjes,
    Lilith ( face 68 )

    • Hey Lilith,

      Het is daarom ook dat ik hier gepost heb.. het is zo een beetje mijn ‘eerste stap’ naar het meer te laten kijken in mijn gevoelens..
      Een specialist vertelde me dat ik dat meer moest doen voordat ik zou instorten..
      Dus met kleine stapjes probeer ik het toch te doen.. Maar gemakkelijk is het niet, voor mij is het veel makkelijker om te zeggen ‘het gaat wel’ dan ‘het gaat niet’ ..
      In elk geval bedankt voor je reactie! Ik heb jouw verhaal ook gelezen en dat is in elk geval een erg zwaar verhaal 😦 Bedankt om het te delen met anderen!
      Groetjes,

      Wendy

  7. I think it is admirable that you want to hide your pain. I’m curious… If you don’t want anyone to know how much pain you’re in, why did you just post it on the internet, saying it six times?

    • Dear Isadore,
      I can’t speak for anyone but myself, but I spent a life time hiding my pain for many reasons. I was afraid I wouldn’t be believed, I didn’t want to worry or cause concern for my family, I think for many of us we spend our lives trying to hide our pain, not out of deceit or shame but not to allow anyone to know how bad we are truly struggling and that sometimes we hide our pain due to fear of not being believed, but with Faces of AS being a project about truth and reality I have decided to share my truth sincerely Cookie

    • Hey Isadore,

      I do get your reaction, the reason I posted here is to start letting people see the pain.. The specialist that told me to let my pain know to people is telling me to start this before I ‘crash’ and with sharing my story on pages with people who ‘get’ what I am talking about I try to start this proces in my head.. No one I know follows faces of A.S. so it’s not telling it to people I know allready.. if you get what I mean..
      Baby steps at a time.. 🙂
      I don’t want to become a wheepy person or a person that whines alot about her health or whatever, but I don’t want to ‘crash’ on the other side and maybe I do want people to realise in how much pain I am in… Meh, my head is a mess sometimes, but I think that is normal 🙂
      Thanks for sharing your reaction in any case!

      Greetz,

      Wendy

      • Dear Wendy,

        I understand about baby steps. Faces of AS is my own creation but I struggled with what I wanted and needed to share, therefor I ended up being Face number 62. One day at a time, one step at a time and doing what is right for each of us. Blessings
        Cookie

  8. I was hoping your answer would be something like this. I’ve had the symptoms of AS since I was around 18. I’m 43 now. Unless you’ve experience the pain, stress, exhaustion and despair of the disease, you don’t have a prayer of understanding it. I think Cookie’s done a wonderful thing in putting this site together. I’m glad you took that first step by sharing your story. It does feel good to speak to people that understand. To look at those big, pretty eyes of yours, I’d never guessed that to be the face of someone in pain. My heart goes out to you. Best of luck.

  9. Hallo Wendy, ja we zijn met verschillende Belgische hier… Ik herken wel wat van mezelf in jou, jij geeft je muziekfestivals niet op, ook al verga je van de pijn, ik geef carnaval niet op. Is maar 5 dagen per jaar en ik ben er goed ziek van erna, maar nee dat pakken ze me niet af. Veel van mijn familie gelooft niet dat ik Bechterew heb, en dat is heel pijnlijk. Maar die ongelovers laat ik dan ook niet zien dat ik pijn heb, ze zouden het toch niet begrijpen. Ik ben blij dat de tnf blockers bij je werken en je je meestal goed voelt!!

    groetjes Claudia, face 70

  10. hey wendy, heel leuk om hier iemand van België te vinden! 🙂 Je verhaal klinkt heel bekend, heb ook Crohn & Bechterew, neem ook al een tijdje anti-tnf. En naar muziekoptredens gaan is ook voor mij een uitlaatklep! Alhoewel dat soms wel moeilijk is, als er bv. geen zitplaatsen zijn, of ellenlange rijen aan de toiletten! Maar livemuziek helpt echt wel om die batterijen weer een beetje bij te laden. Rock on!

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