They are the 4 words that have shaped the last 8 months of my life. Most of my experience with them has been negative. Its true, people are afraid of things they don’t understand. Some are starting to come round now though. Reluctant to admit it at the start – many people have abdominal problems that are not being explained adequately by their general practitioners. And when they are explained – its with conjecture and coincidence. IBD is not a disease of coincidence. It is however, a disease that no one wants, and no doctors want to diagnose. Of course there cant be anything seriously wrong with you…. Of course not.
I am in the position I am in because I have had Crohn’s disease for 20 years. The disease has been left to run ramped through my system for two decades. My Crohn’s itself is on the milder end of the scale, but my complications aren’t. If I achieve nothing else in my life, I want there to be some form of accountability for practitioners. If they someone’s symptoms reflect a few different diseases – even some on the more severe scale, they should be tested for all of them. Disease like Crohn’s cant and don’t distinguish between good and bad people. It doesn’t pick and choose. It just is. No matter how unlikely it is, no matter how many times you quote the chances, its still happening. Indiscriminately and more often. Surely they can see the trend, surely the can see the number of cases growing. Autoimmune is the plague of the 21st century and many of us have already fallen victim.
Anyway, yesterday was a big day for me. We had the work Christmas party in the morning, which consisted of a boat ride out to an island just off the South-Queensland Coast and lunch there. During the boat ride out – I had a “Crohn’s Moment”. Can you think of anything worse than having to abruptly break off your discussion and literally run for one of the boats few toilets? Yep I can – all the toilets are full and there is a queue outside privy to every sound and some of the smells. Fantastic – its one of my nightmares. I made it in time and skulked out quietly. I have to live with you Crohn’s, I know that, but it doesn’t stop me from hating you! The rest of the day was mostly okay. Our summer afternoon on the beach turned into a tropical typhoon, but that’s all part and parcel with the Gold Coast – you see the best and the worst of her during the summer time. The trip home was uneventful – just the way I like it. After the work function, I had the good fortune of being invited by my father to another Christmas party – one that could mean big things for my future. We rushed home and I got ready – remarking to myself that the dress I chose looked better on me a few years back… I ran out the door, late, with my hair still wet, stuffing the things I needed into my small black bag.
After all that it turns out that my haste was unjustified. We were the first there by about 10 minutes. I sat there playing with my hair, coaxing it to dry so I didn’t look like an inhabitant of Nerang. As people started to arrive, it was obvious to me that I was not prepared for THIS kind of function. I mean, I don’t really have a problem walking up to people and starting conversations, in this instance however, I was well and truly out schmoozed. I still have a lot to learn about situations like that. Last night wasn’t going to be the night I swept in there and was offered multiple, high paying jobs with benefits. Instead – last night was a rather big learning curve. The lady holding the function was a representative of one of our state political parities, one which I unashamedly support. She brushed be off at the beginning of the night, she was in a rush and I was no one. I mean I couldn’t even provide financial backing for her and her party. I was furniture and I felt like it too. So much for wanting to get into politics, right? As I picked my way through the buffet, weeding out the safe Crohn’s foods my father whispered to me “we never told her you know – about your….”, hah he still cant bring himself to say it. “Crohn’s disease”, I replied at the normal volume. “Its okay dad”, I told him “me and Crohn’s have sort of an understanding now, its better that I do talk about it – its better that people do know whats out there”. He went on to tell me that the MP who I spoke to earlier in the night was a registered nurse before she was in politics. I made the decision right there at the buffet that if tonight wasn’t going to help me – it was going to help Crohn’s sufferers. I decided to grab her ear before I left and tell her a part of my story. Tell her that drugs like Entocort need to be subsidised for all Crohn’s suffers, not just the ones who are cared for through the public hospital system. And I also wanted her to know that it wasn’t the public health system that failed me, it was most certainly private practice.
We ate and schmoozed until it was time to leave. My father said goodbye and I thanked the MP for having us. And then I said it. “I have Crohn’s Disease”. She looked at me in horror and I thought “what the hell have I just done”. She opened her mouth and I still can’t believe what she said. “I just diagnosed my own son with Ulcerative Colitis – it was either that or Crohn’s”. I stood there, I am sure my mouth was wide open. Her son is 24 and has been on a strong course of steroids to force his disease into remission. Contact treatment for Crohn’s and Colitis is similar – so I know how he feels. Unfortunately he has just experienced a relapse… I listened to her intently and finished her last sentence “it’s hard, because no one talks about it”. We looked right at each other. I went on to say there needs to be some accountability for private practice. We all think we are doing the right thing when we go to a doctor we have to pay for… and he let me down… he may have let others down. She took my hand and told me to call her receptionist during the week – to set up a meeting with her… she asked if her son could be there also – if I minded. I told her that was fine, that I tell a couple of hundred strangers my most embarrassing Crohn’s moments on my blog – I certainly don’t mind sharing them with a real person who will get real benefit out of them.
So that’s it…. 4 words that I have had to force out lately are the same words that may be able to help others with IBD. You know the reality is, I would love to be in politics, it fascinates me. But I’d like to help the people suffering with IBD more. If it means putting my aspirations on the back burner, then, so be it. If I can help just one person get a diagnosis quicker and get the drugs they need cheaper – then really that’s worth more than any job.
That’s why I wanted to get into politics in the first place, to help the people who aren’t being heard. Maybe I don’t need to be a politician to do it.