I don’t look sick, not from the outside
you can’t see what’s wrong with me by using your eyes.
I ache and shake, feel hot and weak
but no one can tell, not unless I speak
to tell you what’s wrong and why I feel dizzy.
I can’t explain what’s wrong as I’m not quite sure
it’s hard to describe and I don’t want to bore.
It’s hard to walk, to stand, to talk
I feel tired and breathless, sick and ill.
Some days I’m fine, I can manage, get by
other days even sitting feels like I might die.
It’s not too bad though, others have it worse
I mustn’t complain, I’m not dying or anything,
It’s just my blood, not doing it’s thing.
My skin can look mottled, blood pooling looks funny,
yet you can’t see the nausea in my tummy.
I itch like crazy, people think I’m anxious
or have nits and lice, anything but an illness.
My heart beats too fast, and sometimes too slow
and sometimes there’s pain, just to let you know,
that my body’s not working, I need more salt,
more water, some rest. A wheel chair maybe? Whatever is best.
And then there’s the heat, I think that’s the worst,
even in winter I feel I might burst.
Hot flushes and sweats, I just feel too warm,
I strip to a t-shirt, I want to be left alone.
The heat makes me angry, stressed and upset,
there’s not much I can do, simply accept.
But it’s hard to live when you can’t do much
and no one can see and you don’t make a fuss.
Invisible disability is what it is called,
something you can’t see yet affects your entire world.
A poem about POTS (postural orthostatic tachycardia syndrome)/dysautonomia