Ready or not, here I come…
I remember playing Hide and Seek as a child with friends. I can still feel the fear of being found, the hope of being “it” in the next round and the excitement of finding that you could squeeze into the tightest hole, like a sardine. Ahh, the days of being young and carefree! But over the years I’ve found myself playing a very different – and less enjoyable – game of Hide and Seek. With my body.
My body has a significantly unfair advantage in this game, which means that it always comes up trumps. No matter how ill I feel, or how many symptoms I reveal to doctors, still the cause and cure remains stealthily hidden away and my body defeats me.
The thing that makes that even harder? I’m not a moaner and during all these health issues, I have remained happy, smiling, hitting it hard with 100% gusto!
Afterall, my body might be defeating me at getting better - but at the same time it enables me to still be alive, even with all the associated problems and deception! The trouble is that then means I start playing my own involuntary game of Hide and Seek with all those around me, just to avoid letting my sneaky deceptive body win. It’s really hard to explain how ill you feel when you don’t actually look ill, especially when you sometimes get responses like, “well you look great”.
I don’t need violins, but having any type of illness where those around us don’t completely understand the pain or the physical and mental strain it has upon us, is tough.
Sometimes I want to hide it with makeup and a smile. To make it easier for me to go on living fully and make it easier for those we don’t know me so well to avoid feeling like they need to ask, “how are you?”. I’ve been guilty of this myself in the past - avoiding asking somebody how they are, not really wanting to hear the answer. Now I know it’s because I can barely deal with all the stuff flying round in my own head and how my own body is feeling to cope with someone else’s problems. Selfish, I know, but I think I’ve learnt a bit of self-preservation, having a hidden illness, in order to protect myself and the others around me from having to deal with it. It’s all a part of the big Hide and Seek game.
I can’t lie – there are times that I’d physically like to hide myself from my illness too.
I don’t like to let negatives win but to be honest, on tough days I would quite gladly keep the curtains shut, stay in bed, not speak or eat and just hide away from everything and everyone… basically play pretend that if I hide, the illness won’t get me. However, I avoid doing this at all costs because it can result in the deterioration of my state of mind, and that is a difficult place to escape and from.
But I’m getting better at sharing and am more open about my thoughts and feelings and the way I feel now. Even to my colleagues at work, because they should be able to spot when I’m burning out too.
I picked up a good read the other day – It’s Not Ok to Feel Blue and Other Lies. This book has been a page turner so far and really enables you to see that you are not alone, hidden illness isn’t just the stoma bag you wear, or the pain you might feel, it’s the pain and the struggle in your head.
Above all, I’m slowly realizing that it’s okay to feel rubbish and still wear a full face of make-up. How I feel may be hidden… but I’m not alone.
Want to read more from Sam? Take a look at her author feed to view a list of previous blogs covering topics related to life with a stoma.