Let’s go back in time almost 10 years. Back to when I was first diagnosed with Crohn’s Disease. I was angry. And I was entitled to be angry – anger is one of the stages of loss. I had just lost my “old life” so I was working through the grief process.
One thing that used to infuriate me was people who told me I didn’t look sick.
‘How dare you say that!’ I used to think, ‘you have no idea what I go through’.
How times have changed…
Now if I eventually decide to disclose… after a long deliberation process… when someone says “you don’t look sick”, I simply smile and say “thank you”.
You see, I’ve come to realise that, that particular remark isn’t an insult, nor is it a sign of ignorance. No. For me, it’s a huge complement.
I hear the frustrated, sharp inhales of disbelief from other chronically ill people – thinking to themselves I’m putting the movement back 20 years.
Well I’m here to tell you – that’s a matter of perspective.
If you have your condition on display and you’re looking for some kind of (I’m going to say it) sympathy and people tell you that you don’t look sick… well, I can see how you’d find that insulting.
Me? I’ve spoken before about trying to pass as a ‘heathy’ person. So my goal is to not have to disclose unless I choose to (i.e my condition doesn’t push me into a situation that I have to tell people). So when I choose to disclose and someone tells me I don’t look sick… that is a massive complement.
It means – I’m just getting on with it – and I’m doing that in such a way that you can’t tell I’m dealing with any health demons.
The disease is still there. I still take all the medication that makes me feel like hell. But even with all that – I still don’t appear to live the life of a sick person. When someone says that… I don’t hear “you must be making that up”. I hear “you are a tough person because with everything going on you look like any other person”.
Think about it… are you your condition? Do you enjoy wearing it like a badge? If your answer is “no”… then why do you want to look sick? Why do you want it to be obvious to other people?
If it is your hope that looking sick will bring you more understanding or awareness… I will repeat my thought process from an earlier post. People can only understand complex health issues from their own level of experience… People are not going to get you any more if you put your illness on display. Instead they now have information about you that could result in a shift in the balance of power in a relationship.
I, myself, have gone through periods of extreme weight loss… times where my hair has fallen out in great clumps… instances were I just look frail from days of diarrhoea and vomiting. Sure I didn’t look great. But I still got up and got on with life – because here’s reality, no one is going to live it for me because I dropped 6kgs in a week. And because I did that – while my outward appearance wasn’t that of a tanned personal trainer – it was never obvious that I was sick.
So I’m going to take this opportunity to say – right now, yep, I don’t look sick. At my new workplace two people know. They know because I decided to disclose due to having information that might help them – information related to my journey. No one else is any wiser…
And here is a huge pat on the back. Sure, it gets bad. And yes, I have days where I want to stay in bed and let life go on without me. It is to my credit that I don’t let myself do that. I think sometimes that if I just stopped and let it all get to me, that I might not get back up. That I might just let chronic illness become a bigger and more obvious part of my life.
I am not my condition. And sure my life has changed. But let’s be frank – regardless of emotional or health issues, life is still what you make it. You get out what you put in.
Despite my challenges, I have a pretty fucking excellent life.