Since my ‘health issues’ started and everything began going downhill, I’ve tried to keep my mouth shut. There are some things you just don’t talk about, things that are personal and private that make you cringe just at the thought of someone else knowing about, be they mental, physical or both. There are things you don’t want aired in public because it may change how someone sees you, how they think about you, how they treat you. Embarrassment, shame, resentment, isolation… it gets exhausting. Eventually, I started to let slip a few things – I’m not doing too well, I get exhausted, I have pernicious anaemia, I get migraines. But none of the important stuff, nothing to give the ‘whole story’.
In starting this blog, I didn’t have a clue what I really expected to do. I knew I wanted to write about invisible illnesses to raise awareness and look at how we can go about coping and getting our lives back, and how we can navigate the system that too often fails us in diagnosis and treatment. But how can I do much of this, or share any of my experiences properly, without revealing myself?
Again, it’s like I’m still living a double life and trying to hide so much of myself. It’s a cycle that’s incredibly difficult to break, and the prospect of sharing things is more than a little terrifying.
Since a recent trip to A&E, another close walk to the edge of wanting to give up, I started to question whether this weight of hiding away is really worth bearing.
What does it really matter? Do I care, or should I care, what anyone else thinks? Will it really be the end of the world that I anticipate it to be if people that know me, mostly people that don’t even see or talk to me any more, what I’m going through? Heck, people are going through a bucket load worse than me – but what I’m going through is my journey and it’s a tough one because I don’t have an overly positive disposition at the best of times. I find things tough. I don’t always see the bright side and tackle problems with gusto. I stress, I worry, I fret and I get down. I’m human. As are we all. Therefore, what I’m going through isn’t a huge deal in the grand scheme of things, but in my world it is. And in your world, what you’re going through is a big deal. That’s the way it is. Why make things harder by adding to it?
I am holding myself accountable. I don’t want to have to continually try to pretend to be fine when I’m falling apart. To make excuses for the things I don’t do because in reality I’m too unwell. To feel the pressure of knowing I look ‘fine’ when I’m anything but, and still trying so desperately to tick the boxes I’m not ticking (relationship, social life, career, own apartment, a family of my own, etc etc) because I haven’t been able to. In a similar vein, I don’t want to feel guilty or judged for a moment where I leave the house and dare to smile or have a moment of enjoyment. I constantly feel like I can’t measure up and it’s lousy. It’s miserable. And I don’t want to do it any more.
So if you are in a similar position, dealing silently with an inner struggle and hidden illness, ask yourself whether the feelings of guilt, shame, embarrassment, and ultimately even resentment, are worth it when trying to appear as ‘fine’ on the outside as you may look.
I hope you don’t care – because I’m trying not to so much anymore either!