Deciding not to shine a light…

It’s May – in Australia May is Crohn’s and Colitis awareness month.

In the beginning – just after my diagnosis, I was going to be a crusader for this disease… I was going to spread awareness… raise money… do all the things. Today – I’ve had a total change of mind and heart. I still maintain this place, because it’s important for me to have a facility to express myself. I think I’ve touched on it briefly before that I can’t do it in my real life – because, quite frankly, only two people in my life have a good handle on my story and they know what’s going on. Some of my darker thoughts though – well they’re not suitable for anyone I have a personal relationship with.

I need to say this – it isn’t my job to be an ambassador for this disease – because I am not the disease. I didn’t make this decision lightly – in fact I didn’t make it all at once… it was slow, a slow realisation that I didn’t really like who I was when I was representing a disease that I loathed.

In a nutshell though, this is why I stopped:

  1. It changes the way other people look at you…
    Whether people who you talk to about a chronic illness want it to happen or not – knowing you have a condition changes the way they look at you. Now I don’t see how that could possibly be good. I don’t want to be looked up to because I’m “brave” because I’m not always. And I don’t want to be looked down at and pitted because I have these issues. I don’t need sympathy – I’ve already gone about the business of morning my old life. And I’ve started creating my new one – which is pretty damn amazing. Not because I’m entitled to anything or I’ve got this great new treatment regime – no, none of that. It’s amazing because I’m making it amazing – all the same stuff happens to me, I’ve just taken to creating other opportunities for happiness.

    Both of these options – they don’t foster any kind of understanding. The people looking at you this way, they are still going to compare you rather serious condition to something you find trivial to try and understand. It’s not out of misplaced intent – it’s simply that people can only empathise with you to the extent of their experience. I find telling people only has two real results a) they stare at you like a martyr and because you don’t get into the juicy details of the disease, they assume you have it under control and move on b) they stare at you like a bird with a broken wing and compare your chronic illness to that time they had the stomach flu – then move on.

    Here’s the thing – while both circumstances end with the person moving on… they can’t unknow what you just told them. So at any point there is friction, your condition is brought up as fodder. And while to them, all it’s good for is a retaliatory comment or a throw away line to make them look superior… to the person going through it – trivialising the issue it probably one of the wounds that cuts the deepest – and trust me on this, some of these wounds I’m still waiting on time to heal.

  2. It changes the way you look at you…
    Oh this is one I’m very very guilty of. And the biggest part of my mindset I’m still trying to change. Sometimes – I think I told people about my condition so they would understand my limitations. I’m going to go back to the topic above and restate that it’s pretty much pointless because people can only empathise to the extend of their experience. So again, I’m not fostering any understanding – all I’m doing is putting my disease limitations on myself. Yes, you absolutely read that right. An individual – regardless of the name of the condition, experiences the condition differently to other people with it. Sure some of the subject matter is similar – particularly medication side effects, but in many of the more complicated health conditions – everyones journey is very unique. So when I say “I’m too fatigued to do that” that’s me bullshiting myself. Unless I’m laying in bed asleep – that’s a throw away line I’m using as an excuse because my head doesn’t want to do said activity. Going back a few years – I realised that I did it a lot. Sure, Crohn’s disease is nasty – and I do have some limitations – but if I don’t push myself, I’m just letting my disease dictate to me. And that is not ok. I am not the person who falls into the sympathy spiral. I mean, really, what good is sympathy? How is it helpful? All I know for sure is when I talked about my illness more openly, I fell into that sympathy spiral deeper and more often. It was completely counter productive… instead of finding ways to improve my life, I sat at home and let myself be depressed about being chronically ill. I bought into my own bullshit. And I let my story become an excuse for letting life pass me by. Do I still have bad days? I write about them right here – so sure. But there are two ways of handling those bad days… you can let it poison the days around them – or you can let them light a fire under your arse so you get the most out of the not-so-bad days. My personal experience was – being open or even being an ambassador for Crohn’s disease sucked me into believing that my disease imposed all of these limits on me. When in reality – it was my own head.
  3. You can’t just take it back anymore…
    This one is a really big one – and one that I’ve become acutely aware of. With the new data retention policies coming into effect globally – anything we put “out there”, regardless of how innocent or how good our intentions are, never goes away. It is legitimately a mark in your ledger that you can’t take back.

    When I was first diagnosed – I had no choice to tell FTJ (my employers) of my diagnosis. I was very sick – and I had eaten into my rather luxurious allocation of sick leave. I can honestly sit here and publicly say that I wish I had of never disclosed. Because all it’s done has become a subject of industry banter – which I’m still hearing about 12 months after I left. My illness isn’t a joke to me – but it is to the people I used to work with and call friends… it’s a topic of lighthearted conversation that always makes it’s way back to me… And even now – this is the one thing they do to me, that hurts. I can’t undo my disclosure… I can’t stop the way my personal information is redistributed by those people. In a similar sense – because of social media – I can’t wave a magic MEN IN BLACK memory device and have everyone on my friends list forget the information I posted about my condition. Information that is in reality private. Why is it such a bad thing? Let me break it down for you – what you post on facebook (or wherever) is out there forever. Your friends can use it against you in conversation or argument or whatever… your family can cut you down by saying something relating to your health that was poorly thought through… but perhaps more of a concern is that information is there fore future employers to scrutinise (and before you think, HA! I have my profile on private, trust that there are ALWAYS ways they find out), you have disclosed things that could effect legal proceedings in cases such as custody… and probably most notably for me right now, Government departments have access to your personal information. So lets say on your immigration record… they can mark that you are chronically ill – which can result in a person being denied entry to a country for fear they will seek medical treatment.

    Having information on someone always shifts the distribution of power – in any relationship. And now it’s a permanent shift because you can never take it back.

  4. You don’t actually effect any change
    Here is the clincher… all your hard work… all your well thought out posts… all the gut-wrenching private information you share to try and make people understand will have very little, if any effect. Because people can only understand something from their frame of experience. To try and understand people will compare your very serious condition to something that they’ve gone through. It’s how it works. In most cases – all this really does is serve to trivialise the situation. Then when those people go to pass on their knowledge – they only pass on the trivialised portions they were able to take for a conversation or post. So in actuality – they are passing on miss-information. Not intentionally. God no. They are doing the best they can and they believe they are helping. But let me break it down for you… and this is the very hard truth that those closest to us understand, somewhat. There is no way you can understand it, unless you have it. Even my doctor – who I adore… sits there and tells me he has no idea what I go through… he has no idea how I do what I do… he knows the medical signs and symptoms and he’s read about it in a book… but he will never understand. And he is my doctor – the person who I trust with my life. I think that should be a revelation to most. We all look for understanding and meaning when something terrible happens. But the only places we find it are in small support groups who have the unfortunate tendency of turning pain and suffering into a competition.

While my head had been heading down this track for some time… it was only in the clarity I found after leaving FTJ have I made sense of it. I’m not saying this should be everyones epiphany… Everyone has their own journey. Everyone should come to their own conclusions. This has been MY epiphany about being an ambassador for Crohn’s disease – and why it’s not right for me.

I could be out there telling people stories about my life, deeply personal stories about my life they could never hope to understand… or I can be concentrating on my next step forward, and my next step – and so on.

That’s been what I’ve decided to do. To get the very most out of my life that I can. I’ve put all the energy I feel as if I wasted in the past trying to MAKE people understand into doing things that enrich me… and it has been a big turn around.

I’m not here to preach to you – this is just my story. Take from it, don’t take from it, think that I’m selfish… whatever you need to do to process what’s going on with you.

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