All That You Don’t See

To Whom It May Concern,

I’ve recently been asked a few times how I manage to do so much. I’ve felt like people see me doing things and don’t realise how much it takes.

For every hour where I’m looking presentable, or am talking articulately and seem like a functional human being, there’s at least an hour before that I’m resting and physically/mentally preparing, and at least an hour afterwards of collapsing.

For every evening meeting, or anything after 4pm, it’s almost guaranteed that I’m hyped up on adrenaline. My adrenaline system doesn’t work the same as most people’s. So instead of producing a little to get through a particular situation, I produce enough to be wired and awake till the middle of the night.

Everything I do comes with payback, it’s just most people don’t see that.

They only see me when I’m functional.

So much goes unnoticed:

• The fatigue crashes after long days or long meetings

• The mornings where I literally cannot move my body because my muscles aren’t working because I’ve overdone things

• The pain. Occasionally you may see my pain patches, heat packs or me taking a syringe of morphine, but otherwise my pain is invisible except to my carers.

• The support I need from my carers in general, but especially before, during and after meetings

• The times when I can’t articulate myself because of brain fog

• The many things I don’t do because I choose to prioritise a meeting, an email, social media, improving the website etc…

Just because you don’t see the toll everything I do has on me, doesn’t mean it isn’t there.

I love doing what I do, but there is a cost. I choose to do things.

It’s not unusual for my carers to question my decisions because they know, better than anyone, what doing things means for my body and mind. They, more than anyone, know that a meeting on Thursday means I can’t move on Friday.

Just because you can’t see the impact, doesn’t mean it isn’t there.

Yours sincerely,

A disabled person