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). 

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

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.

“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.

Take yourself into consideration – the MLitt Publishing Project

It is said that one in four has some form of mental illness. Look around you; if it’s none of your friends, it’s probably you. The easiest to ignore, when there is so much to do, to achieve, to learn, to perfect, is yourself. What you need and should have around you to be that perfect person you long to be.

A while back I began a project for my MLitt studies together with Saila Turkka, for the lack of a better word – my “cousin” (my mother’s best friend’s middle daughter whom I more or less grew up with, so as good as a cousin, right?). The project is to show off the MLitt students’ abilities in all the things we’ve gathered in our knowledge and skill baskets over the length of our studies.

Mine became a sample for a book that is in planning (and in making as soon as a sponsor/financial backing/commissioning is secured) on Saila’s first hand experience as a mother with post-natal depression.

I was lucky to have such a fantastic project partner in Saila – the back and forth with us was continuous, ideas were flying and the project was changing weekly, if not even daily. From humble 16 page plan into the final 28 pages it was a journey of learning and exploration.

Saila is an inspirational woman. She is a woman, a mother, a wife and a survivor. The way she openly discusses her journey from succumbing into post-natal depression, with links to her past depressive phases, through her struggle to find proper care into her current life as an artists and a chairperson of HELMI,  non-profit mental health organisation that “wants to attack prejudices held against psychiatric patients and those who are not in the mainstream of society”.

The project was my chance to explore and use CS6 that I had no previous experience with (and I have to say, it is a wonderful creative program, a must-have!) and to be creative again. I missed that. I don’t think I have delved so deep into something creative in years. What made it an exploration was how all the discussions, all the research and how close I was with the project, how it made me look back inside the pits of my own mind.

I have always been a loud, non-stop speaking, hyper personality (overwhelming in my excitement) – at least out on the open. But in my own mind there are recesses and pathways that I prefer not to wander about too closely. Remembering how some years ago it had a very adverse reaction when I did. I like to be in control and I like to fill any silence with noise, either with my actions or incessant blathering. I have had many a teacher, professor, friend and family sigh and roll their eyes at my out-of-controllness. Perhaps it is all combined or symptomised with my ADHD, but surely part of it is just me. Just me not really being comfortable in my own skin at times. And this causes marked times when I cannot function.

On top of that, the past couple years a lot happened that had my head spinning, made me work nearly non-stop and despite people I love telling me to slow down, cut back and take some time for myself I couldn’t and wouldn’t. I was afraid to stop moving. I believed that I would crash if I stopped. But what actually happened was that because I didn’t stop, I crashed. I cried randomly, and not that sweet few tears that you just can’t hold back – but that big ugly mess of a wallowing in my own inabilities kind of blubbering. But naturally only when no one could see or hear me. I would also collapse on a few occassion on my way home, literally down to my knees, as I couldn’t breath, couldn’t comprehend the street in front of me and my body literally came to a halt. Panic attacks settled in.

Ultimately I got yelled at by my mother to actually take some fricking time off or else… And what I did – as a 28 year-old in charge of my own life who doesn’t need her mother to tell her what to do, right? – was go see my doctor and she immedialtey signed me leave for stress, anxiety and symptomatic insomnia.

The first week I would still wake up very early, as I was used to it, but all I had enegry for was move from my bed to the couch. And watch TV all day. Second week I still woke up early, moved to the couch but would even read books now (good books, great books, interesting books). Third week I started seeing and talking with people again, and realised all I needed was time off for my body to function again. What comes to the functions of my mind, well, that is a whole other matter that is yet to be determined.

The project had a profound impact on me. It got me thinking. It got me wondering. It got me to admit perhaps, just perhaps, my emotional turmoils do need more attention than I allow them for, before they are to swallow me up as a whole. It is never, ever easy to admit there might be something wrong, there might be something that needs looking after, that you are not perfect and invincible – especially when that something is not palpable.

What Saila has taught me is resilience, to learn from what we go through to become who we are meant to be. Pursuit was and is for me much more than an university project. I am now stronger and happier, I am ready for my future and I am my own person.