After being diagnosed with Crohn’s disease in 2000, it was apparent that NO-ONE had heard about this disease before. And by the way, it totally SUCKS that it is called a “disease”… it sounds horrible and life-threatening, and scary, and people are grossed out and not sure how to react (when I say “people”, it’s accurately more “me” I’m talking about). I think “syndrome” sounds more interesting…Crohn’s syndrome… actually, that sounds like a psychological disorder… I may revoke doctor’s naming rights! Don’t they realise that the negative connotations in language choice have a profound affect on us? I’m going to NLP all up in this joint! (note to self: do a NLP course)
So yeah, I now had “Crohn’s Disease”, and as a teenager, could best explain it to friends as a digestive disease where my immune system thinks its own tissue is bad so starts to attack it. It’s a pretty simple explanation but kinda works. As I got older, I got to use more fancy words and phrases like “auto-immune disease”, “perianal Crohn’s”, “rectum” or “rectal abscesses”… still sounds like shit! But just more sophisticated… or at least I sound like I know more about it, and if I say fancy words, maybe people won’t ask too many questions…
I’ll never forget in HSC Biology class my teacher was really excited to give me an assignment on auto-immune diseases (since everyone at school knew about my condition and I had had 3 months off school in Year 10 and then subsequent weeks dealing with pain, fistulas, fissures, abscess clearing, new treatments etc. over the next couple of years) and asked me to write some research on Crohn’s for her so that she too could understand it better. Truth be told, even after being diagnosed a few years earlier, even I had NO idea what Crohn’s was. This was because I was in the MAJOR DENIAL stage. I kept thinking that I didn’t really have Crohn’s, it was just something I had to deal with every couple of months. It was my parents, especially my mum, who really dealt with it. They spoke to everyone, researched, bought books, talked to doctors. I remember my mum even taking me to Canberra for a day to meet with a naturopath/homeopath/holistic medicine doctor who did all these tests on me.
Anyway, so I start researching Crohn’s, and I do a little reading about it, but I remember it just became too difficult to process. I ended up plagiarising the whole assignment because I couldn’t even deal with learning about it. My teacher was impressed with my (copied) assignment, and even mentioned it to the whole class. Still to this day, I have no idea what I submitted to her. And now, I am a teacher, to all you students out there, DON’T PLAGIARISE! Do as I say, not as I do.
I think that anyone who has been diagnosed with an illness at a young age is really disadvantaged by their youth – being young means dismissing responsibility, not really being diligent with things that matter, caring more about what others think of you, wanting to party… All of these things get in the way of dealing with, and healing your illness. And unfortunately, my parents took on the burden of me being sick, which I know was incredibly stressful and painful. As a woman who wants children someday soon, I only have the smallest inclination of what it must be like to see your child suffer with something that you feel you have no control of. I see it now as an adult, who stills gets my mum to come to some of my appointments to help me hear and process huge chunks of information from doctors, that it has its toll on her. Which in turn makes it harder to deal with because I then try and put on a strong and happy face so that I don’t make them suffer.
But yeah, being a teenager with Crohn’s, I didn’t want to deal with it. I would be fine all week, go out on the weekends with friends and then on Monday I wouldn’t feel so good and by the end of the week I would be back in hospital. I pushed myself, didn’t eat well, didn’t regularly take my medication, all the things that you shouldn’t do when you are not well. I neglected my health because hey, I was young! Young people don’t deal with this shit! They’re out underage drinking, kissing boys, gossiping with friends, eating McDonald’s, playing sport, smoking cigarettes… looking after your health does not get taken into consideration when you are trying to fit in with everyone who is “normal” around you and not dealing with this kind of issue. I didn’t want anyone’s pity, didn’t want anyone to see that I wasn’t well. I denied feeling pain because I didn’t want to deal with it, to the point where a doctor once said to me “The amount of pain you should be feeling, you should be in a wheelchair right now”. I was kinda impressed by that statement, that my pain threshold was so high, but looking back now, that is super scary!
I don’t know what to teach kids today what to do if they are diagnosed with something, because I remember it so clearly that I didn’t want to deal with it, which kind of perpetuated the problem. Even though my mum was SUPER diligent in cooking for me, taking me to doctors, giving me my medication, I definitely think that if I had been more aware, more concerned, more responsible, I could’ve helped the situation more. Could’ve, should’ve, didn’t. My psychologist sister tells me that today, more young people who are diagnosed with something get referred to a psychologist to help manage the denial, and learn to accept it and take better responsibility for it. Which is something that wasn’t really available to me 14 years ago when I was diagnosed, so I hope that it is making the difference for others today. DENIAL is not a great place to start at, however it is a safety net, and was the only way I could’ve dealt with my Crohn’s diagnosis at the time. And still to this day I have periods of time of denial, where I think or say things such as “I don’t have Crohn’s anymore”, “I don’t need to take this medication anymore”, “I feel sick because I’m stressed, it’s not the Crohn’s” or “Panadol will sort out the pain”, so it’s an ongoing journey to keep remembering that DENIAL doesn’t help you deal, or heal, with your issues.