An edit of this post was published on The Mighty
I am lucky enough to be able to work part-time whilst managing my Chronic Illness. To do so means I have to keep a lot hidden from view, behind a more presentable mask. I do my best to smile through the bad days and to not let my symptoms show.
If you catch me at the right moment I might give you an honest response when you see me at work and ask “How are you?”. And I see confusion cloud your face when my answer doesn’t match up with what you were expecting. Sometimes I have to hold my tongue as you correct my response or offer your own assessment on how I am doing.
I can see how easy it is to imagine that the me you see here at work, extends beyond 5pm into my evenings and days off. That this put together functioning person continues into an active social life. To think that this elaborate façade is all there is to me.
But what I need you to understand is that you only see the very best of me. There is much more I will never let you see.
You don’t see the isolation, the days spent propped up on my bed desperately trying to refresh my weary body. When no amount of inactivity can make my body remember how to store energy. You won’t know just how boring and frustrating rest can be, when it is forced upon you. When your companions are head aches, muscle pain and the characters on the television. On those days you try not to open Facebook because seeing all those happy smiling faces leaves you feeling horribly alone. It is as though you are moving in slow motion, whilst the rest of the world is speeding past.
I don’t let you see the fear. How terrifying it is to have a body that is seemingly out of control. To not have any idea what the future holds and watch you life deviate from what you had planned. I get worried when each new thing I try to help, doesn’t make my symptoms better. Or panic when my memory fails and important things like my postcode slip out of my mind. You don’t see how afraid I am that there will come a day when I can no longer force my body to go into work. That this job may be another thing that my illness will take from me.
I don’t let you see the times when tears fill my eyes at my desk because my brain is so tired and so full of fog that the noise in the office feels like a special kind of torture. Or the days where I don’t leave this floor because stairs would just be a step too far. Or when I have had to stand up longer than my muscles could cope with and I sink into my chair, my body shaking from the effort of it. All the time knowing I’m going home to a flat that I will be too tired to clean and to food I don’t have the energy to cook.
And when you see me at a social event. You don’t see the careful planning that has gone into minimising the damage. How I’ve tried to ration my energy all day to save it for this. You won’t see the inevitable crash afterwards, because no amount of preparation ever prevents the fallout. You can’t know that I will be paying for this outing for days or even weeks to come. That sometimes the worry about how high the cost will be, can stop me from enjoying whatever it is I’m doing in the first place.
And I don’t expect you to know all this. I know there are many parts of your life that I also don’t see. I don’t know what your smile is covering.
But I would ask that you stop for a moment when I tell you how I’m doing. Before you dismiss my words and give your own opinion on my situation. Stop and remember that there are parts of my life that you don’t see. And I will try and remember the same for you.