Monthly Archives: March 2017

Invisible Illness – or how to multiply by three

People who see you in a café or on the street, who talk with you at work or in the shops see a normal young woman. Fairly decent looking, soft around the curves, blue eyes and a quick smile. They see a person whom they probably forget moments later as that’s what we do with
strangers – passersby who don’t occupy a permanent space in our continuum of daily routines.

Quite unremarkably, our daily lives evolve around our own needs, wants, routines – our very own do’s and don’ts. Those passersby wouldn’t “sense” the churn in your gut, the ping-pong match inside your head, the tremor in your hands which you keep deliberately constantly busy or in your pockets; you don’t mean to wave so much when you talk – it’s a means to an end. They wouldn’t notice the wobble in your legs or tightness in your chest, or mourn with you the sudden shorter haircut you just had (as you try to hide the drastic hair loss). FB_IMG_1447633471140

Even those closest to you whom you see or speak to nearly on a daily basis miss the signs – not due to any fault of their own, but rather because you have become a master of guises as varied as your symptoms. One for each day, person and definitely each situation, warranted or not. You know whom you can be weak with and whom not, though given the choice you wouldn’t anyway. So you put on an act.

With no outward, visible, tangible symptoms who would believe you anyway? You don’t ail the same way as they do, bounce back the way they do, snap out of it like they would, spend your times of remission they way the expect, or deal with your relapses as they have advised. So you must be okay.

It is an invisible illness as when you see me you see no scars, you see no bodily fluids oozing out of me in dramatic gushes and you don’t hear  me moan as I hold my forehead, a lady about to faint, softly and delicately. As one ought. But I don’t

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It can’t be that bad if you’re out and about, right? It  can’t be that – you ate that burger! It can’t be that bad when you can come to work.

They don’t know that going out is a form of self-medication; they don’t know how walking helps with pain or how socialising helps your mood despite being so doped on the meds they bump into you that you can barely follow a conversation.
Or you just needed a distraction, a feel for normalcy.

They don’t know that the day before that burger you ate nothing because even a sip of water would create cramps so violent you threw up pile and today you are feeling better – and ravenous. You got to take those moments because you don’t know when the next one comes around.

They don’t see how despair each morning when you discovery yet another piece of clothing you don’t fit in anymore as the medication that is helping you also comes with an anthology of side effects and makes your body distort. You win some you lose some.

They don’t see that the smile, quick wit and talent for banter you spout and the non-stop go-go-go you are at work is letting you try to be one of them, not the weak link, show yourself and them you can do it, you are valuable, you can be productive member of society – and that makes a difference for them and you. You are not alone.

Every invisible illness is as different as is every survivor. The coping mechanisms suit our needs, not your wants. Some want, yearn and demand their illness to be recognised, understood and seen so they don’t struggle alone. They want awareness. Some just want to plod along, un-judged and unnoticed. Move on and forget that today it took me an hour to convince myself to get out of bed and get dressed and go out just for a cup of tea so I feel like me, not like a piece of furniture. Some are (admittedly like the writer) stubborn and proud and hate nothing more than to be continuously seen as a patient, as someone who is sick, to be felt sorry for. The attention, pity, disbelief, worry, and resentment, the desperate want to help and want to make it better for you – it all piles up. And many in recovery tend to end up caring more for those wanting to help than helping themselves.

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“Pick yourself up, dust yourself off, puck up buttercup.
So much to look forward to, you can do it.
Try this, you’ll see, you’ll feel different.
It’s a new day, keep your head up.
It’ll pass, just take your meds.
You’re over-thinking it.
You don’t look sick.

It could be worse.
Snap out of it.”

See, that gig I went to? Did you see how I spent half of it crouched behind peoples’ legs as I couldn’t stand upright from pain? Or did you know I took the first sick leave in more than a year just so I could have time start the recovery my way – not yours. If it makes you feel better to scrutinize my way of weaving through this rotten hand I’ve been dealt with, telling everyone she must not be sick because she is walking, talking, socialising, or eating this and drinking that, that is your prerogative. But don’t do it behind my back, don’t analyze me without having a day in a body that is attacking you, or a mind that paints a picture you don’t quite grasp see or a brain that disconnects and connects at lightning speed from one thing to another. Talk to me. Look at me. See me.

If you don’t see me, don’t judge me – I might not do what you expected from me, but I am doing my best to do what is right for me. I am not you – I am a rainbow; and I quite like me.

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Just Like Starting Over

It has been more than a decade since I have been able to listen to without a cringing and, more so, to enjoy the Beatles or John Lennon’s songs by any degree. Ruined by a jealous guy who claimed to be re-born Lennon, the new musical messiah and my knight in a rug. I was 16. And soon enough I was letterswatching the wheels go round and round without ever mounting to anything except all his loving. No instant karma there, except as a torture device, excuse for bad behavior – a tool to twist and shout, order me to get back in line. How dare I buy chewing gum on a free period from school and not tell him about it? It’s
like how do you sleep at night, knowing a day in the life of someone like you made a woman like me feel worthless and insecure, scared and at the same time – curiously fascinated? You were the walrus, the nowhere man that was here, there and everywhere. I had no chance. You said all you need is love – and I gave you all my loving. We dove head on to helter skelter.

In our mixed emotions and thoughtlessness it never dawned that our life together could have been so precious, and we could have grown – spread our wings and fly – and it could have been just like starting over? It rather became the long and winding road, the pressure of constant demand of oh my love, love me do. I was 19. And I didn’t yet know how to say no, I can work it out on my own. I can be me and still be worth something.

For the decade after I used to walk out the room, leave the table for bathroom, change radio channels, skip the song on playlist, talk loudly over each song as soon as I recognized it for what it was. Nobody told me these memories lose their meaning over time, but I know I’ll often stop and think about them. Thinking about the time when you showed up in a rug under the balcony and sang Jealous Guy like your life dependent on it. And maybe it did. Sure felt like it. You were just a loser. you let me down. You did warn me; you were beginning to lose control, acted like a clown.

So how do you sleep? Now the sound you made is muzak to my ears, and you must have learned something in all these years. I know I have. I have learned I am strong, I am 2D11403865-today-beatles-140123.jpgworthy, I am smart, I am a loud mouth nasty woman that would never again tolerate what was said and done. I’m not 19 anymore.
Do I have to keep on talking
till I can’t go on? Well, now I’m 31 and I am no longer grooving up slowly, well over the joker who did what he pleased, and I am reclaiming the Beatles and John, too.

Hello, goodbye and welcome back, gents, I’m sure we can work it out!

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