Friday, 23 May 2014

Cloak & Gagger

There’s a certain ‘inspirational’ quote I see bandied about social networking quite regularly. Something twee along the lines of “the strongest people fight their battles in silence” – I hate, hate, HATE it. Let me count the ways in which I hate it. For a start it’s wholly inaccurate; how many ‘strong’ people have been surveyed to reach this conclusion exactly? They surely can’t have advised they are ‘fighting a battle’ because they are clearly mute. Did they write their issues on a white-board to express the level of their strength? Or did they arm wrestle someone to the ground to prove their superhuman might?

I also dislike the impression it gives that people who are open and talkative about their illnesses are somehow in the wrong or ‘faking it’. Or, even worse, that they are the opposite of strong; weak. This is something that every Crohn’s, Colitis, or Cancer patient I have ever met, has NEVER been. This daft quote also implies it’s a good and somewhat brave thing to do to keep your pain to yourself.

I’ve been living with a chronic and incurable illness for some years now, and here’s what I’ve learnt about ‘suffering in silence’ – it doesn’t work.

Silence leads to feelings of isolation and loneliness. Silence causes people to make assumptions about you. Silence ensures you reach the wrong conclusions.
Don’t get me wrong, I don’t think everyone with a health issue should necessarily be shouting it from the rooftops, boring the drawers off everyone they meet by describing every twinge or bowel movement in graphic detail. But I do believe remaining silent about the difficulties you face doesn’t help in any way. Especially when you have been recently diagnosed. Finding out you have a serious, debilitating and life-changing illness can be a terrifying and incredibly uncertain time in any person’s life, whatever age they may be. It’s absolutely vital a patient has someone to talk to. This can be anyone you feel comfortable with, from your doctor or nurse, friends or family, or a colleague. Even relative strangers on social networking and in support groups can quite comfortably and gladly take some of the burden from your weary shoulders.

I’ve personally been on both sides of this conversational coin and I know now that I could never go back to keeping my disease quiet. For one, I am not ashamed of my condition. Remaining silent on what I go through would only cause those feelings of embarrassment and shame I once had, to return with a vengeance. I never want to feel alone, it’s one of the most miserable feelings in the world. I want to continue to reach out like a hungry baby clutching for a bottle towards the people who love and want to help me.
This doesn’t mean I tell everyone and their cats about my illness. I certainly don’t. Not because I am ashamed or afraid of what people may think, but because my condition isn’t relevant to every conversation I have with every person I meet. Like my love of cats, David Bowie and ridiculous 1940’s frocks, some aspects of my life are only privy to those who have been lucky enough to penetrate my inner circle. Obviously I now have to painfully include certain doctors in that bracket L

 When I was first diagnosed with Crohn’s Disease I was terrified, withdrawn and thought I was going to die. I was bombarded with information but couldn’t see beyond the fact that it was ‘incurable’. Doctors spoke at me about treatment and recovery rates and remission but all I could see was their mouths moving and smiling pitifully at me whilst I tried to stop myself from crying feebly every time they came near me. I cried a lot. My family and friends cried and we tried to stay positive all the while knowing we were acting out Oscar worthy performances to make one another feel better. It didn’t work. I got flowers and chocolates and magazines and cards and felt special for 5minutes then remembered why this was happening and sunk back into feeling pathetic. I told everyone I was ‘fine’ or ‘getting better’ because it was what they wanted to hear, when all I really wanted to do was soak their shoulders with tears until my eyes were barren. Strong eh? No, it wasn’t. But when I stopped crying and the shock wore off and I started telling the truth, I’ve never felt stronger. I won’t ever call myself weak again because I may physically be too fragile to lift a book at times, but mentally I am more determined than ever.

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