Kylie Maslen - Show Me Where it Hurts

My body dictates who I am. I work the way I do because of my body, I vote the way I do because of my body and I live the way I do because of my body. It is not my body that is at fault, but societys failure to deal with bodies like mine. I might be in pain, but I am whole. I refuse to have the difficult parts cropped out.

Kylie Maslen has been living with invisible illness for twenty yearsmore than half her life. Its impact is felt in every aspect of her day-to-day existence: from work to dating; from her fears for what the future holds to her difficulty getting out of bed some mornings.

Through pop music, art, literature, TV, film and online culture, Maslen explores the lived experience of invisible illness with sensitivity and wit, drawing back the veil on a reality many struggleor refuseto recognise. Show Me Where it Hurts is a powerful collection of essays that speak to those who have encountered the brush-off from doctors, faced endless tests and treatments, and endured chronic pain and suffering. But it is also a bridge reaching out to partners, families, friends, colleagues, doctors: all those who want to better understand what life looks like when you cannot simply show others where it hurts.

This book is framed around my own experience in the medical system and the political and societal structures that surround it. I only hope that others find some kinship here, or by understanding one story see that there are many more to be told.

I want to be clear that while I speak of diagnosed conditions from my own standpoint as a cis-gendered woman (meaning my gender identity aligns with the sex I was assigned at birth), endometriosis affects all genders. The prejudice experienced by trans and intersex people with endometriosis in particular is abhorrent and demands a whole book on its own. I have therefore not sought to cover this terrain within this one.

There are a number of content warnings throughout this book. I would urge you to consider them if you need to keep yourself safe and time your reading accordingly.

I would also encourage readers who dont need to follow these warnings to consider why experiences like these are so common among those with chronic mental and physical illnesses.

If anything in this book brings up issues for you, please contact the service most appropriate to your needs:

Lifeline: lifeline.org.au or 13 11 14

Beyond Blue: beyondblue.org.au or 1300 224 636

CALD mental health services: embracementalhealth.org.au

Kids Helpline for people aged 525: kidshelpline.com.au or 1800 55 1800

LGBTIQ+ mental health services: qlife.org.au or 1800 184 527

National Aboriginal Community Controlled Health Organisation: naccho.org.au/ member-services/naccho-member-services

National Sexual Assault, Family & Domestic Violence Counselling Line: 1800respect.org.au or 1800RESPECT (1800 737 732)

CONTENT WARNING

Discussion of mental health

treatment and suicidal ideation.

People ask, How are you?

What I want to say:

Do you ever feel like this? Because I dont think this should be happening.

Do you ever start to cross the road too late to make it to the other side without running, knowing that youre not going to run?

Do you ever have days when youre not in pain? What does that feel like?

What I actually say:

Im okay.

Im tired, but okay.

Im tired.

Doctors ask, When did the pain start?

What I want to say:

I dont remember a time without it.

What I actually say:

Twenty years ago.

Doctors then ask, What about this level of pain?

What I want to say:

Twenty years ago.

Fuck, Im tired.

What I actually say:

Its been this acute for four days.

Doctors ask, How have you been feeling since I saw you last?

What I want to say:

Im running out of words.

What I actually say:

About the same.

Doctors: Give that to me as a number from one to ten.

My life of chronic illness and chronic pain is one of resting for hours and hours.

I feel guilty for all the times Im forced to cancel plans because I dont have the energy to socialise after work, or its raining and humidity increases my pain, or the pain has been so intense for days on end that I cant get rid of the dark cloud above my head.

Its not just that I feel bad for missing the parties, dinners, dates and coffees. Its also that I second-guess my relationships because of all of the special occasions I wasnt part of.

Does she believe me?

Do they think I dont like them?

Is he angry I missed his wedding?

I think of all the children in my life whose growth I track only in pictures, the precious hours not spent with ageing relatives, the quality time that passes me by that could see acquaintances become close friends.

Some days the pain leaves me without the energy to do anything but eat, stay upright and think clearly about the meds I need to take. Then my need to rest becomes unavoidable. My body is a car trying to run on empty.

Other days I find myself with a quarter of a tank. I feel the pain always, but I have been granted the freedomalbeit a temporary oneto rejoin my friends and loved ones.

Though, inevitably, that freedom is taken away.

I can picture the two of us in Mums living room. That house, that couch, means I was seventeen and my brother fifteen. We had recently been uprooted by our parents difficult separation. That house, that couch, signified a physical settling-down. Emotionally, however, we were still shaken. We were arguably too old for cartoons, but considered ourselves connoisseurs of them anyway. We needed comfort, we needed simplicity and we needed to laugh. So whenever my brother and I could, we sat down and watched cartoons together for an hour or two, relaxing into the silly but heartwarming stories that wrapped up neatly in twenty-two minutesthe inverse of the family drama still playing out in the shadows.

The 90s felt like a golden age of animation: technology leapt ahead and, suddenly, what had looked like jolting sketches across a screen seemed warm and flowing. Blues Clues and Rugrats were made for small children, but we loved them all the same. Arthur was pitched slightly older, but its earnest sincerity kept it wholesome. Pinky and the Brain and Daria were our favourites, taking their audiences to darker and more sarcastic places. Rockos Modern Life and SpongeBob SquarePants made us laugh out loud. The Simpsons, Futurama and South Park would screen later in the evening, but our time together was cemented in the hours between coming home from school and dinner. That was our chance to laugh and relax before homework inevitably took us to our separate rooms. The memory of those hours spent with my brother is a precious part of my life: here we were laughing and being juvenile, unintentionally making up for lost time.

Things people say:

You must be so on top of all the good shows!

I wish I had that much time to watch TV!

So do you have book recommendations for me? I would love to read more.