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Adult male holding a Halloween candy bucket walks on a path that resembles a spine that leads to an ominous door. Around the door are ghosts flying around. Trick or treat. Symptom flares, BIPOC

Trick Or Treat: How Living With AS Is Like Halloween All Year Round

Halloween is all about things that are scary and having an incurable condition is as terrifying as it gets. This got me thinking about a few similarities between the holiday and living with AS.

I know that probably sounds utterly ridiculous (like a great deal of the things that come out of my mouth) but please allow me to try and explain just what I mean by this.

Wearing a "costume"

Sadly, there is no fancy dress costume allocated to people when they’re diagnosed with AS - although that would be pretty cool. What I’m talking about here is more of a metaphorical costume. AS has the potential of bringing two types of costumes to the party of life – one that we are forced to wear and another that at times we feel we must cloak ourselves in.

The first costume is our bodies themselves. For the most part, AS is an invisible illness. Often our skin itself acts as somewhat of a costume - covering all the hidden horrors that we have inside. When people see me - a man in his twenties- walking down the street (especially on days when I don’t use my crutch) they would never guess that I’m living with an extremely painful and life changing chronic illness. It certainly does a much better job at concealing who is really underneath than the outrageous and very cheap octopus outfit I wore last year!

Then there are the times when we think what really is going on under our skin would be too terrifying to reveal to others. This often means that we disguise our true feelings - put on an ‘emotional costume’  and pretend to others that everything is okay when they most certainly aren’t. I know that being open and avoiding bottling up these emotions is something we should be doing, but unfortunately there are times when it doesn’t feel appropriate to do so.

Tricks

To be honest I have never understood what exactly a "trick" is in terms of Halloween. Back in my trick or treating days, my neighbors would either open their doors and give us candy treats or the ones that didn’t celebrate would tell us to get off their property immediately (usually using more colorful language in my area). There was never a trick involved sadly. Actually, for years I thought that we were all saying ‘treacle treats’ as it made more sense to me. But let’s not get side-tracked from the article at hand by delving into my questionable grasp of the English language.

What I do understand however, are the tricks that AS likes to play on our bodies. We can sometimes be lulled into a false sense of security and naively believe that we are feeling up for going out and doing something. Then BOO!  We are attacked by a cocktail of pain and stiffness that stops us in our tracks and transports us into a world of suffering that only the characters in the Saw films could relate to (well maybe not quite that gory).

Treats

Unfortunately, I’m not talking about snacking on some delicious sweets. A lot of the pills I have had to take for my condition have been far from sweet! In fact, for a lot us, eating too many sugary things can send us to a world of pain, which although sounds pretty Halloween themed, is no fun at all.

The treats that AS gives us is those days where our bodies kindly decide to behave themselves and give us pain that doesn’t actually interfere with our day. These may be few and far between but we should cherish them when they come our way as we never know when we are going to be tricked by a surprise flare up again.

Final thoughts

The unpredictability of AS means that each day we don’t know if are waking up to a trick or a treat from our body. So when your body politely decides to stop tricking on you and gives you one of those treat days – grab it with both hands (or hooks if you have opted for a pirate outfit this year) and make the most of it!

There usually gets to a stage at a Halloween party when it doesn’t make sense to keep your costume on anymore. As with the emotional costume we put on to hide our true feelings - don’t be afraid to take it off and open up to your loved ones about how you are feeling when the time is right. There are some demons you don’t want to be carrying with you whether it is Halloween or not!

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