When people look at me, I like to think they often see someone who throws themselves into everything. But I also like to think I hide the impact of being the girl who throws herself into everything – The struggles I face, and the difficulty of keeping myself afloat while facing a very real, very fluctuating chronic illness. Sometimes though, the mask needs to break and the reality needs to come through.
In all honesty, I think sometimes that being someone who is unwell and living a fairly normal life can be even harder than being a) completely well or b) completely ill. I mean, each of these come with their own issues: paying bills, having a social life and all life’s problems are shared across the board. But being at that half way house, there is no common ground. It’s hard to accept help. People who are ill believe you are living the life of riley – I mean, you can get out of the house and live your life (for which I am very grateful), surely everything is fine and dandy? But being invisibly ill and doing everything a normal person does whilst being ill means there’s often a lack of understanding from all sides.
I don’t blame people for this lack of understanding – how can they know? But it does make it a very lonely affair. Doctors who have nothing more they can do to help, lecturers who are just doing their jobs, companies who just need staff, friends who say: “But you’re not ill?” yet don’t see the side of you that is too exhausted to feed yourself, to think, or the side that has to sit in the library for a few hours just to get enough energy to jump on the bus for the ten minute ride home. It’s no-one’s fault – in fact maybe it is mine. I have painted myself as someone who is invincible, with an endless supply of energy, so yes some blame lies with me (who doesn’t paint their life as perfect on social media), but it doesn’t change the fact that for me it is a hard, and often lonely, struggle. The pretence of ‘I’m fine’ is sometimes more exhausting than the pre-existing exhaustion.
I try to be overwhelmingly positive, and I’m so lucky to be surrounded by my family and friends… but when I feel so ill my usually sharp brain goes into meltdown over trying to break through the mist in my mind to simply decide what I want from the supermarket, or when my body is moving without my permission or when I have deadlines that I can’t complete due to utter exhaustion, I have to take a moment and step back. I stop comparing myself to others and look at how far I’ve come. It is lonely, and yes it’s weird and frustrating – but isn’t that just life?
I think the point of this blog wasn’t just to have a moan (though I did need one), but to ask people to show some compassion. Whatever position you’re in, there is no black and white. People are always going through stuff. Different stuff depending on the person. But it’s our job to look through the mask and ask ‘how are you?’ And more importantly, we need to listen to the answer.