"But you don't look ill"

"But you don't look ill"

It's a phrase all sufferers have heard. Whether it's out loud or from the looks on their faces.

But it's not sympathy or pity we want - it's compassion, understanding and patience; in bucket loads where possible.

If you're visibly ill, it's clear to see the pain and suffering you endure each day but there are many illnesses and conditions where the pain is on the inside. We are fighting a silent battle, and most days we hide it well. Not because we want to but because it's the only way we know how.

The best comparison I've heard to date is that of an iceberg (and no, not the lettuce).

An iceberg has two aspects. The first is clearly visible on the surface, glistening in the sun. The second is the giant mound underneath - so deep and hidden you'd hardly know it was there.

We may smile and laugh on the surface, but underneath there’s a pain and agony so fierce that there are no words to describe how we really feel.

Chronic pain is defined when a person feels prolonged pain for longer than 12 weeks, but what do they call it when it's been years? I can't remember a day without pain. If I woke up pain free tomorrow I wouldn't believe there'd been a miracle, I would believe I was dead.

I am by nature a pessimist; I think I have my father to blame for that one. He isn't a 'glass half empty' kind of man - his biggest question is........ "Where's the glass?"

I go into consultants appointments with the worst case scenario in my head. 

There are good days and bad days. The good days don't mean I am 'better', they are just when flareups aren't as bad and a light at the end of the tunnel starts to glimmer in the distance.
The bad days are when you realise that light is a mere figment of your vivid imagination. Or perhaps just a freight train that's actually heading right towards you.

Unfortunately it doesn't get any easier, it just becomes part of you and you learn to adjust around it.

We all remember the days when we were 'normal', we long for it in fact. But that day is either unlikely to happen, or for some it never will, and that is hard. It's a daily emotional struggle but it's OK to feel low and cry - it's OK to want to give up.

Whatever your battle, it would be virtually impossible to ignore it every single moment, perhaps even inhuman.

Pain is like a tap at the door - sometimes light, sometimes a heavy knocking. But it isn't the illness that defines you, it's the courage you show to get out of bed everyday and face life in spite of it.

Sometimes I am snappy, short and even vile, but that's not who I am, it's my pain screaming to be heard, and for that I am truly sorry. 

My pain alter ego is kind of a dick.

I walk around almost 'normal'. If you watch carefully, I lean to one side and have limp or wobble. But my biggest issue? Chairs! 

My condition means sitting in chairs is extremely painful. I know, it sounds crazy right?!

I think I spent most of my teen and early adult life sitting. We do love to sit.

But now it's met with pain and the longer I sit, the more pain that there is. It's awful to feel anxious about sitting at work. Trying to avoid driving at all costs. 

Worrying about going to restaurants or travelling.
But my biggest worry, trying to find the words to describe to someone that this is an actual condition! Of all the things you worry about in life, having problems with chair sitting surely hasn't crossed anyone's minds recently?

I know a lot of pain sufferers struggle to concentrate and I am also familiar with this. I believe it's referred to a 'brain fog'. Can you imagine someone asking you to work something out whilst stabbing you with a needle? Work, exams, and even watching TV, brain fog is hard to overcome.

So to all the brave chronic warriors, keep your chin up and fight another day!

And to everyone else, if you know someone suffering, give them a hug. Clichés and judgement doesn't make our lives any easier, but just knowing you're there for us and that you have our backs, that's what really counts.