A friend of a friend who used to work for Women’s Health magazine approached me at the beginning of 2013 and asked whether she could write about my Crohn’s story. She wanted to use me because I was stable in remission, even CURED I had thought. I had bragged to a few people that my Crohn’s no longer existed within me – I believed this because I had no symptoms, I felt good (so good, I even stopped taking my medication), colonoscopies couldn’t find any Crohn’s in my body, blood tests looked positive, I had met some cool people in Bali who taught me how to heal myself with healthy food and water and how to use positive language to say “I HAD Crohn’s” (past tense), and was finally so convinced that I was so in tune with my body that if something did start to flare, I would know about it immediately and would be able to manage it.
So I agreed to do this article, and it was the first time I had ever openly talked about having Crohn’s. Writing the history of how it all began, my symptoms, my treatments and how far I had come was a huge breaking of the barrier I had put up to protect myself from the embarrassment of having a disease and feeling abnormal to begin with! While I typed up my story before hitting ‘send’ I began to sob uncontrollably – it was the release I had needed after years of keeping it all a secret. Don’t get me wrong, friends and family knew I had Crohn’s, but they didn’t know how much I actually suffered with it. They didn’t know the gory details of my symptoms, didn’t know how many operations I had, how I used to be in so much pain after a bowel movement… I hid it from everyone. My whole teenage life, my parents used to label me as a “horrible morning person” – I’d come down into the kitchen, scowling, not wanting to talk to anyone, moving away from them if they came over to touch or kiss me (I am a super affectionate person usually), snapping if someone was trying to talk to me – what they didn’t know is that the reason I behaved this way in the morning was because I was in such excruciating pain after having a bowel movement that I could barely stand, let alone sit, and I was trying so hard to hold myself together that even talking or smiling was a mission. And this went on for years. Even when I worked at a school in Macau, my colleagues thought it was cute that I brought a really soft pillow from home to sit on to help ‘prop’ me up at my desk. The truth was, I was in so much pain in the mornings that I couldn’t sit properly – I would have to have something soft to cushion my butt, or I would sit to the side, or sit with my leg crossed underneath me.
I’m not sure exactly why I didn’t tell people that I was suffering all that time – a combination of denial, not wanting people’s pity, not wanting to burden people or worry them, not wanting to deal with it by saying out loud that it hurt me – but it was tightly under wraps. And by the time this article was being created and I was being asked about my story, I felt like it was time to unveil the truth after 13 years of having Crohn’s. I wanted to help others who were suffering by finally sharing my story. I was happy for strangers to know what I was going through. But I still wasn’t comfortable with all my friends and family knowing that I had contributed to the article, so I only told a select few about it once I knew it was officially going ahead.
And the day I had finished writing my story and answering all the journalist’s questions via email, I wanted the first person to read it be my fiance (now hubby). But I told him he could only read it when I was out of the room (I was terrified to watch him read it!), so I went and had a shower, and started to cry. I cried and cried, releasing it all out of my system – nervous that he may be grossed out by me now, embarrassed that I had shared so much, and ashamed for being sick and that I may one day be a burden on him. And he read my story AND heard me crying in the bathroom, and before I knew it, he came into the shower with me and hugged me, and told me that it was all good. And it was – knowing that he accepted me for all my flaws AND my Crohn’s was the most wonderful feeling in the world, and it gave me strength and solidified my decision to contribute my Crohn’s story to the magazine, and essentially, the world.
And then 7 months later, it was edited and published in the November issue! I got to do an awesome photoshoot for it and feel like a model! It was a great day. I actually felt PROUD that I had “had” Crohn’s because it allowed me to share my story. And I was written about because I was a “success story”… I mean, the by-line to my story was my quote “There are no traces of it [Crohn’s] in my body now, which is extremely rare”…Pffttt… Look at how cocky I was!
And slowly but surely, people found the article. To be honest, I didn’t think people I knew would buy Women’s Health Magazine…I mean, surely, all of my girlfriends are still reading Cosmo? But nope, I was receiving phonecalls, emails and texts of people congratulating me and commenting that they had no idea what I was going through. I felt relief. People still loved me, and weren’t going to shun me. I can’t even explain the sensation – I can’t even explain why I was scared that I thought people wouldn’t want anything to do with me if they found out about my Crohn’s. Looking back now I realise how irrational that was, and how much EXTRA suffering I had gone through by keeping it a secret, and then having this build up of anxiety that if people found out that they would no longer accept me. But I guess that was my journey with processing my life with my Crohn’s.
So, why the embarrassment? After feeling so much pride, and then relief after the article was published… well… I got sick again. I not only had to deal with the physical and emotional trauma of having a relapse, but I felt this incredible sense of embarrassment and shame. I had finally shared my secret to the world under the pretense that I was speaking in hindsight, from a healed place, and then I had a relapse! What a fool I must have looked to everyone! Here I was telling the world, “Hey! I’m cured! Look at all the amazing things I did to get to this very rare circumstance of not having Crohn’s again! And I’m getting better everyday!” – Talk about commentator’s curse!
When I talk to family and friends about my embarrassment, they tell me not to feel that way, because it was all true for me at that time. They tell me that it gives other Crohn’s sufferers hope or that it helped extinguish the taboo factor of talking about it to the world. They remind me that through this article, I developed my own awareness of my condition, and that it was a necessary part of my own healing… and as much as I know what they are saying is true… I STILL cannot shake the feeling of being embarrassed by it all. It’s just…ugh…so annoying! I mean COME ON! I was just featured in a magazine about being HEALED of my Crohn’s and then 3 months later I am SICK with Crohn’s! It couldn’t be a more eye rolling moment! SERIOUSLY!
*Sigh*… Looking at the positives of this whole situation, I am now very comfortable about sharing my story of Crohn’s (obviously) and don’t feel like I need to hide symptoms from people – I mean, I’m not sharing EVERY detail, but if I’m having a bad day, or feel sick, or need help with something, or am in pain, I can let people know without feeling bad about it. So that’s a great thing. I don’t have to suffer in silence anymore. And the more I open up about my condition, I think this awareness and acknowledgement helps with my healing process.
So hopefully in time, I will be able to reconcile this feeling of embarrassment about publicising my Crohn’s “success” story in Women’s Health Magazine and then getting sick again… hopefully soon. Am in the process of creating a new success story for myself by following all my treatments and staying positive. It may not be a definitive cure, but it’s definitely getting me back on the right path to dealing and healing with Crohn’s.