I haven’t written in a while and there are several good reasons for that. I am going to have to get to those later.
I cried all the way home from work tonight, the whole way. I had my performance review today and it was fine – just what I expected. I didn’t expect there would be any pay rises or bonuses and I wasn’t surprised. That however, has bought me to a very grim reality. I am going to have to start looking for another job – simply because we are struggling financially and I am all out of choices. Should the decision to leave a job come down to the bottom line? If I’d never been diagnosed with Crohns Disease, I would have walked away happy today cause very positive things were said. But I have Crohns Disease, and even with both of us working full time, my parents are still having to help with my medication. We never recovered from all the tests, and now with interest rates having gone up so much so quickly and basically having to pay equivalent to another mortgage in medication costs, we are quite honestly fucked. I have about $1500 worth of vehicle related costs coming up in the next few months and this fortnight we were able to save exactly $32.00. That’s all that was left over after bills, food, fuel and mortgage. Keep in mind that’s not including my medication costs – which my parents have paid for entirely this month.
I got no extra money – its been 5 years since I have had a pay rise outside of the twenty or so dollars from the CPI increase. The worst thing is I knew there was no money this year, but I held my breath and hoped. The deal was, either my partner gets one of the jobs on the Coast he has been interviewed for or I get a pay rise… they were the conditions for me being able to stay where I am. Neither of these things have happened – so now I find myself starting to look even though it breaks my heart a little bit more with every keystroke. This is not what I wanted. This is the last thing I wanted. But here I am, here we are. All because I have Crohns Disease and I’d rather not have to stoop to nuking my body with prednisone just yet – to be honest with you I’m not sure my employer would want me if I was on the drug… I don’t think I would be productive enough to keep my job with all the side effects I’d be in for.
Don’t get me wrong, I realise times are tough for the company, I crunch the numbers so I know better than anyone, but … it’s a matter of $75 a week to keep me in my job, on the right drug and in our house – without it something’s going to give, and I want to cling to this house and the better drugs for as long as I humanly can – that leaves me with one last choice.
I don’t think I can find the right words to express how much I hate this disease. I hate it almost as much as everyone’s nonchalantness towards it. Almost as much as the people trying to make it into a competition of “who’s life’s more shit”. It’s not really a game I want to play let alone win – I don’t say the things I say to start a fucking competition. Maybe three people in my life understand that I don’t talk about Crohns disease and what its doing to me to make people feel bad, make out that I have it worse than anyone or drum up sympathy. No. I try to talk about it because I need to talk about it. It has made me shake my head lately, all the hours I spent consoling others, only to be met with contempt when I need to talk. I thought that these things worked both ways – I’m there for you, your there for me. I am finding its more like “your there for me and I’m there for you – assuming you don’t have Crohns Dissease or anything else that’s going to make me uncomfortable”.
So I was fortunate to be working for a company didn’t seem to see Crohns as a disability. I had sick leave built up in case I needed to urgently go into hospital, I liked my job and the people. The one thing pushing me out is that we can’t make ends meet. Is that my fault? How the fuck was I meant to know I would be in this position 7 months ago when we bought this house – I was told I had migraines, arthritis and a food allergy.
I have repeatedly emailed members of parliament with my story – desperately trying to get my steroid (the one specifically for Crohns) at the very least on the PBS list – I haven’t got a reply. The only thing there is to go to the papers and expose to the entire world that I have this disease, so even people who walk past me on the street can look at me like I’m a leper.
We have no other options. So I have registered for Seek mail again, and started approaching employment agencies… the whole time, choked up with tears of regret and remorse wishing that there was a way out of this mess I hadn’t yet considered. Will my new employer understand that I just get sick every few months and need time off? What if my bowel perforates and I actually make it to hospital alive – I doubt very much my sick leave will cover recovery time…? And what about the 40,000 doctors appointments I have to go to – how do I explain that without letting the cat out of the bag. And lets be frank – who is going to hire me if I am up front and tell them I have Crohns? No one in their right mind. I wouldn’t even hire me at the moment with my health still so up in the air.
I am fucking beside myself tonight – a complete and utter mess… Ross, Maz and Leanne – well fuck, without you three…. I’m not sure if I would have even made it to tonight… Does anyone else give a damn? Maybe, but I find it very hard to believe right now given the contempt, disgust and general lack of interest and compassion I have been met with over the last 3 months.
The one common thing I have heard from other people with Crohns is the feeling of absolute and impenetrable solitude. People think they get it – and say they do, but they don’t. Only people with the disease understand how it fucks every single part of your life. And a very special and select few others take the time to listen not to judge and to understand that there is no way that they could ever understand.