Table of Contents

01

Editorial letter

Angela Iaria and Baya Ou Yang

LETTER

02

Roundtable: Communication

Dominique Acciarito, Kaitlyn Blythe, Khadija Gbla, Helene Hill, Iman Rahman

Section Opener

03

Windows of pain

Artie Carden, Kenzie & Rosa (Sick Sad Girlz), Fi Macrae (Private Parts Community), Iman Rahman

Interactive Article

04

There are better ways to explain pain

Rally Team

Explainer

05

We can hold two (competing) truths at once

Julia Bak

PERSONAL NARRATIVE

06

Me vs me

Lou Wall

Video

07

Representation matters (unless it sucks)

Alex Creece

Listicle

08

Music for insomnia

Michael Sun

Playlist

09

Roundtable: Systems

Sophie Aylmore, Kaitlyn Blythe, Tori Hobbs

Section Opener

10

Types of medical bias

Rally Team

Explainer

11

Me vs me

Ashley Apap

Video

12

The weight of the medical system

Renay Barker-Mulholland

Personal Narrative

13

Catharsis

Tori Hobbs

Playlist

14

Moments of impact

Angela Iaria

Personal Narrative

15

Roundtable: Solutions

Sophie Aylmore, Kaitlyn Blythe, Tori Hobbs

Section Opener

16

Alternative ways of living

Sejal Bhikha and Thomas Feng with Emilia Schnall and Nory Gretz

Photo Essay / Interview

17

Rethinking sick leave

Stephanie Riordan with Leon Harper, Amity Mara, Kate Marshall and Róisín McGee

Podcast

18

Read, watch, listen

Rally Team

Interactive Article

19

Act: Support the Disability Justice Network

Rally Team in collaboration with the Disability Justice Network

Interactive Article

1 / 26
An arrow pointing right, indicating 'next'
Previous
Next
An arrow pointing right, indicating 'next'
An arrow pointing right, indicating 'next'
An arrow pointing right, indicating 'next'
Exit
Article

Meet the contributors

Alex Creece

Writer

@roguedyke

Amity Mara

Podcast Interviewee

-

Artie Carden

Content Creator

@artiecarden

Ashley Apap

Video Creator

@ashleycrapap

Dominique Acciarito

Video Interviewee

@thespooniesocietyau

Em Jensen

Photographer

@emjensencreative

Emilia Schnall

Photo Essay Interviewee

@missemiliamusic

Fi Macrae

Content Creator

@privatepartscommunity

Grace Taylor

Illustrator

@gracetaylorillustration

Helene Hill

Video Interviewee

@thespooniesocietyau

Iman Rahman

Content Creator& Video Interviewee

@alilbitofaith

Julia Bak

Writer

@mugworts

Kaitlyn Blythe

Video Interviewee

@blythebyname

Kate Marshall

Podcast Interviewee

@katemarshall82

Katie Zhou

Illustrator

@katiezhoudesign

Kenzie TTH

Content Creator

@sicksadgirlz

Khadija Gbla

Video Interviewee

@khadija_gbla

Leon Harper

Podcast Interviewee

@leon.ash.harper

Lou Wall

Video Creator

@thelouwall

Michael Sun

Playlist Creator

@michael.pdf

Nory Gretz

Photo Essay Interviewee

@norygretz

Renay Barker-Mulholland

Writer

@firstnations_feminist

Róisín McGee

Podcast Interviewee

@roisin.mcgee

Rosa Mercuriadis

Content Creator

@sicksadgirlz

Sophie Aylmore

Video Interviewee

@sophie_aylmore

Thomas Feng

Photographer

@thomasfengg

Tori Hobbs

Video Interviewee & Playlist Creator

@jackiebyjoanne

A cover image with headshots of each guest, and the words 'rethinking sick leave' above them

Podcast: Rethinking sick leave

Trying to manage a full-time job while confining the flare-ups of your chronic illness or disability into just ten days of sick leave is a pretty impossible task. In this podcast, we ask the question: Are there better ways to support employees beyond the current model of leave?

Transcript available here.

Exit
Article
Exit
Article
A headshot of Tori

A playlist from

Tori
Hobbs

The disabled experience is wide and varied. No two are the same, but we still build worlds and communities around our collective experiences. We recognise our strengths, our unique perspectives, our joy. How we push on despite everything and hold each other, near and far, through it all. When it feels like the rest of the world has left us behind. 

This playlist is for all those times you feel isolated, for when you’re invited to your friend's DJ gig but the venue’s inaccessible, for when you shit your pants because all the bathrooms at the train station are closed, for when you’re in the car after a life- changing specialist appointment, for when you’re in line at the chemist transferring money out of your savings account to pay for your medication because it isn’t subsidised by the Pharmaceutical Benefits Scheme (PBS), for when you’ve exhausted all your sick leave at work. For all those moments when you desperately need to dance, or cry it out, or both. 

A playlist to listen to when you are going through it, curated by some people who have been through it too.

A playlist to listen to when you are going through it, curated by some people who have been through it too.

Exit
Article

A playlist from

Michael
Sun

Did you know that mediaeval humans used to sleep in two phases? One in the evening, one in the early morning. I know this because I used to Google it all the time when I couldn’t sleep in the middle of the night. I have no idea why I did this; call it delirium. It offered no comfort — I would convince myself the story was merely apocryphal. And, more importantly, we are no longer living in mediaeval times. Disordered sleeping fell out of fashion long ago. 

There is no romance to insomnia, despite what Sleepless in Seattle may suggest. Above all, insomnia is not chic; being tired isn’t a personality. Because I am melodramatic, staying up into the dark makes me want to literally die. Nothing to do but push through the roiling hours. 8, 12, then 24 hours awake: a feat of endurance with no medal at the finish line. May this playlist be your reward. 

A playlist to listen to when you are going through it, curated by some people who have been through it too.

A playlist to listen to when you are going through it, curated by some people who have been through it too.

Exit
Article
An illustration of the Sick Sad Girlz sitting in bed. The name 'Sick Sad Girlz' is hung up behind them in bunting lettersAn illustration of Sick Sad Girlz sitting in bed
Sick Sad Girlz
Sick Sad Girlz is a community platform that shares and celebrates stories of people’s personal experiences with chronic illness, mental health, and what it means to feel like a girl in the world. With a growing community across the globe, a podcast and weekly community meetings, Sick Sad Girlz exists as a support network and a reminder that whatever you’re going through, you’re not alone. Welcoming anyone who identifies with the SSGz community, our ethos is universal: no one is too sick or sad, or not sick or sad enough, to share their story.
We love a crybaby (!!) and we believe in the release that comes with letting your emotions out !! A big reason we created this platform was to encourage ourselves to share our stories rather than suffer in silence and hope that others would feel empowered to do the same.
We must remind ourselves that ‘one size fits all’ is an impossible approach to life. One rule we do try to follow is asking ourselves ‘what do I need?’ before considering how we may be seen by others or what ‘normal’ looks like. And if someone wants to tell us that we’re needy or impossible for that? We’re so grateful that there’s a community of SSGz who beg to differ.
We talk a lot about our relationship with medication, taking meds, side effects, getting diagnosed in the first place... the list goes on and on! A lot of our SSGz have shared their own stories around medication, tips and tricks for reminding themselves to take their prescriptions, what their regular cocktail of pills and potions look like and how it all feels. The pill box also feels like a symbol of the regimens and checklists of all the things we have to consider and contend with as Sick Sad Girlz on a daily basis!
We have a series where we talk about Sick Sad Girlz Thru the Ages: Figures in History that we relate to and that have a story around illness, sadness, and feeling like a girl in the world. We find that it helps contextualise our own experiences and is a nice reminder that we're not alone.
Performing wellness and the idea that being a Sick Sad Girl can look a million different ways, and not always in ways that are visible ! Also, how many times have we gotten dressed up to make ourselves feel a little better/more like "ourselves" in a moment of Sick Sadness!?
Sometimes at our Sickest and Saddest, we find it difficult to define boundaries and set them up in a way that feels good and helpful. Sometimes we're the ones who have pushed ourselves to the point of burn out and are feeling the repercussions in the form of flare up/low mood. Whatever it is, boundaries have a lot to do with our pain world.
We love a crybaby (!!) and we believe in the release that comes with letting your emotions out !! A big reason we created this platform was to encourage ourselves and each other to share our stories rather than suffer in silence and hope that others would feel empowered to do the same.
We love a crybaby (!!) and we believe in the release that comes with letting your emotions out !! A big reason we created this platform was to encourage ourselves to share our stories rather than suffer in silence and hope that others would feel empowered to do the same.
I have to remind myself that “one size fits all” is an impossible approach to life. Do I contradict myself? All the time, but I’m kind of convinced that’s just what life is. The one rule I do try to follow is just asking myself ‘what do you need?’ before considering how I may be seen by others or what ‘normal’ looks like. And if someone wants to tell me that I’m weird or needy or impossible for that? I’m so grateful that there’s a community of SSGz who beg to differ.
We must remind ourselves that ‘one size fits all’ is an impossible approach to life. One rule we do try to follow is asking ourselves ‘what do I need?’ before considering how we may be seen by others or what ‘normal’ looks like. And if someone wants to tell us that we’re needy or impossible for that? We’re so grateful that there’s a community of SSGz who beg to differ.
We talk a lot about our relationship with medication, taking meds, side effects, getting diagnosed in the first place... the list goes on and on! A lot of our SSGz have shared their own stories around medication, tips and tricks for reminding themselves to take their prescriptions, what their regular cocktail of pills and potions look like and how it all feels. The pill box also feels like a symbol of the regimens and checklists of all the things we have to consider and contend with as Sick Sad Girlz on a daily basis!
We talk a lot about our relationship with medication, taking meds, side effects, getting diagnosed in the first place... the list goes on and on! A lot of our SSGz have shared their own stories around medication, tips and tricks for reminding themselves to take their prescriptions, what their regular cocktail of pills and potions look like and how it all feels. The pill box also feels like a symbol of the regimens and checklists of all the things we have to consider and contend with as Sick Sad Girlz on a daily basis!
We have a series where we talk about Sick Sad Girlz Thru the Ages: Figures in History that we relate to and that have a story around illness, sadness, and feeling like a girl in the world. We find that it helps contextualise our own experiences and is a nice reminder that we're not alone.”
We have a series where we talk about Sick Sad Girlz Thru the Ages: Figures in History that we relate to and that have a story around illness, sadness, and feeling like a girl in the world. We find that it helps contextualise our own experiences and is a nice reminder that we're not alone.
Performing wellness and the idea that being a Sick Sad Girl can look a million different ways, and not always in ways that are visible ! Also, how many times have we gotten dressed up to make ourselves feel a little better/more like "ourselves" in a moment of Sick Sadness!?
Performing wellness and the idea that being a Sick Sad Girl can look a million different ways, and not always in ways that are visible ! Also, how many times have we gotten dressed up to make ourselves feel a little better/more like "ourselves" in a moment of Sick Sadness!?
Sometimes at our Sickest and Saddest, we find it can be very difficult to define boundaries and set them up in a way that feels good and helpful. Sometimes we're the ones who have pushed ourselves to the point of burn out and are feeling the repercussions in the form of flare up/low mood/feelings of overwhelm etc. Whatever it is, boundaries have a lot to do with our pain world.
Sometimes at our Sickest and Saddest, we find it difficult to define boundaries and set them up in a way that feels good and helpful. Sometimes we're the ones who have pushed ourselves to the point of burn out and are feeling the repercussions in the form of flare up/low mood. Whatever it is, boundaries have a lot to do with our pain world.
Exit
Article
An illustration of Artie sitting in bed. The name 'Artie Carden' is hung up above them in magazine cut-out lettersAn illustration of Artie sitting in bed
Artie Carden
I'm Artie (they/them). I'm a queer non-binary multiply-disabled creative. The combination of conditions I've been diagnosed with over the years has left me feeling lonely in mainstream society. Having been mostly housebound since late 2018, many of my in-person friends have dropped out of the picture, leaving me desperately trying to fill the void of loneliness isolation has given me.
 
I began writing and making videos about my experiences as a chronically ill person. I also created accessible resources for newly diagnosed patients in plain language so they didn't have to immediately learn medical language to understand their condition and their options. Through social media, I've been able to make connections with incredible people who share their pain worlds with me as I share mine with them, making my pain world a little less painful to go through everyday.
My tidy is not like yours. Something I’ve come to understand about myself is that the tidy sold to me by society is just not something I can do or keep up with. It also just doesn’t work for me!A HUGE thing I learned: I’m not lazy, messy, or useless. I need a different system and that’s fine.
I’ll tell you where it hurts. I don’t believe in invisible disabilities. I believe in non-disabled people not knowing the signs of disability. My joints ache, my skin blisters and bruises super easily, I wear sunglasses even when it isn’t sunny. There are always signs. You just don’t know how to spot them. #MyDisabilityIsVisible
I used to be really really active when I was a teenager (still chubby but very active). We used to do three hours a week of performing arts together PLUS in-school productions. I miss dancing, I miss improv classes, I miss feeling strong and feeling like I had strength. I AM STRONG. But I am so tired. And it breaks my heart.
I’m really tired of medical admin gaslighting me. The people who look at you suspiciously when you say “blood tests and cannulas are easier to get in this arm” or “blood pressure machines don’t work on that arm, you have to do it on my left” like I haven’t owned my own body for 27 years.
I'm Sick is a zine working through the grief of being disabled in the pandemic. Iused DIY crafting and collaging style to express the isolation of lockdown and the impact of ableist ideas in society.
It's a zine for when you want to feel seen and cry.
My tidy is not like yours. Something I’ve come to understand about myself is that the tidy sold to me by society is just not something I can do or keep up with. A HUGE thing I learned: I’m not lazy, messy, or useless. I need a different system + that’s fine. I just wanted to share one of my biggest struggles with you. I’m only JUST getting some grip on it. I turned 27 two weeks ago. 🙃
My tidy is not like yours. Something I’ve come to understand about myself is that the tidy sold to me by society is just not something I can do or keep up with. It also just doesn’t work for me!A HUGE thing I learned: I’m not lazy, messy, or useless. I need a different system and that’s fine.
I’ll tell you where it hurts. (Swipe to image 2). I don’t believe in invisible disabilities. I believe in non-disabled people not knowing the signs of disability. My joints ache, my skin blisters and bruises super easily, I wear sunglasses even when it isn’t sunny. There are always signs. You just don’t know how to spot them. 💕#MyDisabilityIsVisible
I’ll tell you where it hurts. I don’t believe in invisible disabilities. I believe in non-disabled people not knowing the signs of disability. My joints ache, my skin blisters and bruises super easily, I wear sunglasses even when it isn’t sunny. There are always signs. You just don’t know how to spot them. #MyDisabilityIsVisible
I used to be really really active when I was a teenager (still chubby but very active). We used to do three hours a week of performing arts together PLUS in-school productions. I miss dancing, I miss improv classes, I miss feeling strong and feeling like I had strength. I AM STRONG. But I am so tired. And it breaks my heart.
I used to be really really active when I was a teenager. I used to do three hours a week of performing arts PLUS in-school productions. I miss dancing, I miss improv classes, I miss feeling strong and feeling like I had strength. I AM STRONG. But I am so tired. And it breaks my heart.
I’m really tired of medical admin gaslighting me.The people who look at you suspiciously when you say “Blood tests and cannulas are easier to get in this arm” or “Blood pressure machines don’t work on that arm, you have to do it on my left” like I haven’t owned my own body for 27 years.
I’m really tired of medical admin gaslighting me. The people who look at you suspiciously when you say “blood tests and cannulas are easier to get in this arm” or “blood pressure machines don’t work on that arm, you have to do it on my left” like I haven’t owned my own body for 27 years.
I'm Sick is a zine working through the grief of being disabled in the pandemic. Using DIY crafting and collaging style to express the isolation of lockdown and the impact of ableist ideas in society. A zine if you want to feel seen and cry.
I'm Sick is a zine working through the grief of being disabled in the pandemic. I used DIY crafting and collaging style to express the isolation of lockdown and the impact of ableist ideas in society. It's a zine for when you want to feel seen and cry.
Exit
Article
An illustration of Fi sitting in bed. The name 'Fi Macrae' is written above them An illustration of Fi sitting in bed
Fi Macrae
As someone who lives in chronic pain due to endometriosis, among other illnesses, my experience in the healthcare system has given me a unique insight into the often tricky-to-navigate relationship between sexual and mental health. Isolation was the driving challenge behind years spent in debilitating pain, trial-and-error therapies, multiple surgeries, hormone treatments and everything in between. In my efforts to access an inclusive online community where allyship and education supported each other, Private Parts was born.

Although the name Private Parts is a cheeky nod to society’s prudishness, the conversations on Private Parts are anything but. In sharing stories, we challenge the traditional narrative of silencing those who experience trauma, who live with a disability, people who experience gender discrimination, survivors of assault and people in marginalised communities.
Welcome to the Private Parts Space. We are so excited you’ve found your way here. We cannot wait to connect with you all.
This week we spoke about finding intimacy or moments of pleasure within diagnosis, disability or chronic conditions. We are so honoured to have Lauren French on board to discuss rediscovering and reconnecting with our bodies.
I will be documenting my experience with opioid addiction and tracking my experience trying to come off them in the coming months.
I’m often asked what to take in for surgery, and seeing as I’m heading in tomorrow, here’s a little video on what I see to be the essentials list. I did however forget slippers / slides / headphones! (And to remove my nail polish.)
We talk to Jude about her practice - shiatsu. Jude focuses on working with people with chronic health conditions, survivors of trauma and the LGBTQIA+ community.
Welcome to the Private Parts Space. We are so excited you’ve found your way here. We cannot wait to connect with you all. 💖
Welcome to the Private Parts Space. We are so excited you’ve found your way here. We cannot wait to connect with you all.
This week we spoke about finding intimacy or moments of pleasure within diagnosis, disability or chronic conditions. It’s a big topic and this is just the beginning of the discussion but we are so honoured to have Lauren on board to discuss rediscovering and reconnecting with our bodies.
This week we spoke about finding intimacy or moments of pleasure within diagnosis, disability or chronic conditions. We are so honoured to have Lauren French on board to discuss rediscovering and reconnecting with our bodies.
I will be documenting my experience with opioid addiction and track my experience with coming off them as I try in the coming months.
I will be documenting my experience with opioid addiction and tracking my experience trying to come off them in the coming months.
I’m often asked what to take in for surgery, and seeing as I’m heading in tomorrow, here’s a little video on what I see to be the essentials list, I did however forget slippers/slides/headphone! (And remove nail polish)
I’m often asked what to take in for surgery, and seeing as I’m heading in tomorrow, here’s a little video on what I see to be the essentials list. I did however forget slippers / slides / headphones! (And to remove my nail polish.)
We talks to Jude about her practice - Shiatsu. Jude focuses on working with people with chronic health conditions, survivors of trauma and the LGBTQIA+ community.
We talk to Jude about her practice - shiatsu. Jude focuses on working with people with chronic health conditions, survivors of trauma and the LGBTQIA+ community.
Exit
Article
An illustration of Iman sitting in bed. The name 'Iman Rahman' is hung up above them in a speech bubbleAn illustration of Iman sitting in bed
Iman Rahman
My name is Iman (she/they), I am a 23-year-old disabled creative. I live with multiple chronic illnesses including ME, POTS, Fibromyalgia, Chronic Migraine, and hEDS. I am a lover of the arts and enjoy dancing and writing myself. I am currently housebound for the most part. I attend most doctor appointments virtually. My pain world is where I am found most. My bright and vibrant room.

Surrounded by velvet throw pillows. Laying down with my  weighted blanket and heating pad. Mood lighting, my bookshelf and reading chair. This is the place where I have created and survived the past 7 years. Though I have not worked or started college, I have learned so much from the online community. When the pandemic first started, I decided to make this space my own. Spending so much time here is difficult so I wanted to make it comfortable. It is now my comfort space even on my darkest days.
Breaking News: I’m in the New York Times. Disabled intimacy, unlike anything I've ever experienced. It's more amazing than anything people could imagine. It's the feeling that people deny is possible for us. The love we find in our community continues to save us.
I wrote this on ME Awareness Day 2021. Now a year later, it still hits home. Thinking of the many millions missing today and everyday. The wonderful friends and community missing from society.
Dancers know staring at yourself in the mirror for several hours a week affects you. Years later I struggle to look in the mirror by choice. I have been told many times that saying affirmations in the mirror can be empowering. I haven’t gotten there yet.
The process of acquiring meds is complicated. I have to convince the doctor to order the medication. There are many ways this can go wrong. Insurance doesn’t cover it, the order was never sent in or sent to the wrong place.
I use voice-to-text when I cannot type. I have wrist pain, my fingers throb, sometimes I cannot put my thoughts into words. I use voice control. Have things read out to me. It can be helpful when I can’t open my eyes during a painful migraine attack. Low volume, of course. I use headphones to block out noise. I have my phone announce my calls so I can decide if I need to pick them up or not when I’m resting. I wish technology was available for everyone. It’s a privilege I’m grateful for more than ever before.
I loved reading a story about two characters who talk about their chronic illnesses in such a real way. Honestly made me feel at home. Like how I do talking about the tough times with you guys here.
Breaking News: I’m in the New York Times‼️ 📰Disabled intimacy. unlike anything I've ever experienced. It's more amazing than anything people could imagine. It's the feeling that people deny is possible for us. The love we find in our community continues to save us.
Breaking News: I’m in the New York Times. Disabled intimacy, unlike anything I've ever experienced. It's more amazing than anything people could imagine. It's the feeling that people deny is possible for us. The love we find in our community continues to save us.
I wrote this on ME awareness day 2021. Now a year later. It still hits home. Thinking of the many millions missing today and everyday. The wonderful friends and community missing from society ❤️
I wrote this on ME Awareness Day 2021. Now a year later, it still hits home. Thinking of the many millions missing today and everyday. The wonderful friends and community missing from society.
Dancers know staring at yourself in the mirror for several hours a week affects you. Years later I struggle to look in the mirror by choice. I have been told many times that saying affirmations in the mirror can be empowering. I haven’t gotten there yet.
Dancers know staring at yourself in the mirror for several hours a week affects you. Years later I struggle to look in the mirror by choice. I have been told many times that saying affirmations in the mirror can be empowering. I haven’t gotten there yet.
The process of acquiring meds is complicated. I have to convince the doctor to order the medication. There are many ways this can go wrong. Insurance doesn’t cover it, the order was never sent in, or sent to the wrong place.
The process of acquiring meds is complicated. I have to convince the doctor to order the medication. There are many ways this can go wrong. Insurance doesn’t cover it, the order was never sent in or sent to the wrong place.
I use voice to text when I cannot type. I have wrist pain, my fingers throb, sometimes I cannot put my thoughts into words. I use voice control. Have things read out to me. It can be helpful when I can’t open my eyes during a painful migraine attack. Low volume of course. I use headphones to block out noise. I have my phone announce my calls so I can decide if I need to pick them up or not when I’m resting. I wish technology was available for everyone. It’s a privilege I’m grateful for more than ever before.
I use voice-to-text when I cannot type. I have wrist pain, my fingers throb, sometimes I cannot put my thoughts into words. I use voice control. Have things read out to me. It can be helpful when I can’t open my eyes during a painful migraine attack. Low volume, of course. I use headphones to block out noise. I have my phone announce my calls so I can decide if I need to pick them up or not when I’m resting. I wish technology was available for everyone. It’s a privilege I’m grateful for more than ever before.
I loved reading a story about two characters who talk about their chronic illnesses in such a real way. Honestly made me feel at home. Like how I do talking about the tough times with you guys here.
I loved reading a story about two characters who talk about their chronic illnesses in such a real way. Honestly made me feel at home. Like how I do talking about the tough times with you guys here.