I'm 'undercover' sick

Last updated 11:45 17/06/2014

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I live with a neurological condition called Pan-Dysautonomia. The cause is unknown and there is no treatment path for me at present. My doctors treat the symptoms as they progress.

It's a strange double life I am leading. Like I'm a secret undercover agent. Except I am not saving the world from crime, I'm just surviving, one day at a time.

There's this magical spell that covers my words, so when I say I'm not well, people don't hear it.

If I do manage to explain anything to them, they forget it and assume I am well the next time they see me.

I don't look sick, I don't act sick. I just am sick. Undercover sick.

Because the person they see, is Rachel; the wife, the mum, the lady who is there sometimes, but mostly, not so much.

You see me in the car, driving my son to and from school, or at the supermarket, leaning on my trolley and contemplating my groceries.

You might see me on a weekend, in a cafe with my family, or having a picnic in the park. You don't perceive a problem because you may be wrapped up in your own problems and I am an expert at covert operations. It's actually easier, most times, than being real.

Sometimes, faced with friend's status updates about feeling tired, or having a cold, I would like to post a real status update of my own. Something like:
"YAY! A new anti-nausea med to add to the mix!" or 
"I'm so CHUFFED! I just administered my own enema and it WORKED! Go me!".

But I don't. I stay undercover and spend my energy on making the least waves possible.

It's not that I don't want to tell people what is going on with me. I'm a talker. Nothing is sacred, I'll tell you everything, in one sitting, given the chance. No, it's because I have learned from my experiences that people really don't mean "How are you?" when they ask it. People really don't want to know.

The crushing reality of that, when you try to answer the question, is truly devastating. It makes you feel small and insignificant. It makes you want to run and hide. Undercover.

Rachel, the wife, is rarely intimate with her husband anymore, even though she loves him. She can't bear that she might smell like urine, that she might leak in bed. So she goes to bed in incontinence garments and tries to pretend that intimacy will happen tomorrow night. Cuddling is better than nothing.

But she is afraid, so afraid that he will stop seeing her as an attractive person. Her belly distends from gastric dysmotility and she feels his eyes appraising her body. His face is blank, she can't read it, so she imagines what he is thinking; it isn't complimentary.

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He misses who she was and he wonders how they got here. He's not sure if he can keep going forever like this. What will happen when they are older? How many more problems will there be? Will he be her carer? She imagines his thoughts and rolls away from him, hoping he will somehow know how much she loves him. She is so ashamed. He deserves so much more than what she has become.

Rachel, the mother, asks a lot of her children. They have to do jobs, unlike most children their age. Her daughter makes her cups of tea and is kind to her brother. Her son strokes her on the face and tells her it will get better. She knows her kids are extraordinarily empathetic. She's proud of that, but she worries all the time. At what cost to their childhood?

How many ways will her being ill, screw them up? Can she stop their anxieties? Should she go more undercover? She knows she can't do all the things they want her to do.

She agonises over how little she can help at school, on trips, at extracurricular activities. She pushes herself to take them where they need to go, but the cost; it is so high. Every morning, she braces herself in bed for the efforts of every afternoon. She cries.

Rachel, the friend, is best online, or text. She has limited energy to maintain friendships. So she has few friends and lots of acquaintances.

Her friends are so very special, so vital to her joy. She loves people, but it's hard to keep it going when her energy is spent on her kids, on her husband, on her housework.

She is often lonely, often down. Mostly, she seeks solace with other people like her, from the comfort of her bed. They are in bed too, online, on laptops, tap tapping away. Shouting a two dimensional hello from a continent far away, but not expecting her to walk the malls, make small talk over a glass of wine or go out for a night on the town. They get it. Those cyber sick buddies, her new social circle.

That is me, driving my son to school. I am fighting back nausea, running the torturous marathon of a five minute drive. I smile at his teacher, through the window of my car while my body aches all over and my left eyelid muscles fasciculate into an unintentional wink. My eyes are so dry that I am blinking like a cartoon flirt.

I hope that you won't pause to chat so you won't see what a wreck I am today. Thank goodness I can drive through to pick up and don't have to stand. I couldn't stand today. You tell me I look well. I thank you. What else am I to do?

That's me, in the supermarket. I am gripped by the searing heat of nerve pain, like my whole left leg has been dipped in a vat of hot oil. I grasp hold of my trolley and try to look like there is something interesting in it. I calculate whether there is enough food in there already to feed my family this week, because I know I won't be shopping anymore today.

I brace myself for the lifting of groceries into and out of my car. I wince at the thought that someone will judge me for using a mobility car park. I swallow it all and smile at you as you pass. I know you from school, right?

That's me, lying on the picnic rug. For me, it's like a raft in an ocean of ever moving waves. I am clinging to my piece of flotsam, watching the kids riding their bikes. I am talking to my patient husband, he needs normal, too. I feel the shakiness inside myself and wonder if it's nearly time for my pills. No, not yet. I concentrate on the feeling of the breeze on my hair and face. It's a beautiful thing.

You see me, care free. But I am not who I appear to be.

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