Updated: Jun 15
If you were looking carefully, my illness wouldn’t be quite so invisible at all. If you were paying attention, you would see the effort that goes into appearing ‘normal’. You would notice the grey, paleness of my complexion underneath my carefully applied make up and the sadness in my eyes that my life is now so limited, so different to what I had hoped. You would see the way I start to rock back and forth when the pain becomes too much, and how my hands start to shake when I’ve over exerted.
If you were looking carefully you would notice how I wince at loud noises and struggle to follow conversations, and how I still feel so awkward about having to ask you to speak a little quieter.
If you were really paying attention, you would hear the yearning in my voice when I talk about teaching and see my desperation to be able to put my skills to use again.
You would see how I hate relying on my partner for so much, and how my self-esteem has been dented by my inability to provide for myself.
If you were really paying attention you would notice the long periods where I simply drop off the map, where I retreat into the safety of my solitude. Not through choice but because I am too fatigued to even hold up a cup of tea or feed myself, and I have no idea how to explain to you how terrifying this feels. I don’t know how to bring you into that world with me, so I exist there alone.
If you looked closely you would see the exhaustion on the face of my partner and the worry on mine that I am holding him back. That this isn’t what he signed up for. That he will eventually get sick of it all. You would see the darker thoughts that swirl around my head: thoughts that he would be better off without me.
If you were looking carefully you would hear me getting out of breath, simply from chatting or standing up to give you a hug. You would see how hard I have to concentrate to follow your conversation because my pain is distracting and all consuming. You would see the regret in my eyes that I can’t join you for drinks or dinner, and the hurt it caused when you stopped inviting me altogether.
If you were paying closer attention you would see the way I try to downplay my symptoms around you because I don’t want to make you uncomfortable, or for you to think that I’m no fun to be around. You would also notice how I always lie about how bad the payback is after spending time with you, because I don’t want you to feel bad or give up on me altogether.
If you were really looking you would see the frustration and the shame I feel at being so dependent on others. You would see the longing in my eyes when I talk about running or hiking, and how hard I try to fight the pang of jealousy I feel when I see you going on holidays, climbing mountains, getting promotions, going out for drinks together and generally doing the usual things a person my age does. You would see that jealousy and understand that it doesn’t mean that I’m not happy for you. I am, but I’m also grieving for myself.
If you looked closely enough you would see the pain and the longing in my eyes when I play with your lovely children, wondering if I’ll ever be well enough to have my own. You would hear the giant clock ticking violently in my body, reminding me of this more and more each day.
But mostly, if you really took a good look, you would see that I am simply missing from my life. I make the best of it, because what other choice do I have? But the truth is I am lost at sea in a boat without paddles, and no one can light the way home for me. I must simply sit and wait, hoping that one day the tide will turn and I will find a way back to my life.
You would see all this if you were really looking.