What does your pain look like?
I feel passionate about this type of advocacy work as a lot of people are in the dark when it comes to understanding invisible disabilities and illnesses.
In order to promote awareness, legislative changes, and ultimately more empathy and kindness for people managing an invisible condition, we need to make invisible conditions, visible. To help in this mission, I feel called to do this by sharing the raw stories and lived experiences, like Kristy’s, through my artwork.
Kristy and I initially bonded over the shared exhaustion of managing an invisible condition with the discrimination, or need to justify our needs, on top of it when help is so often based on looks: “You don’t look sick to be sick”; “It can’t be that serious, you look fine to me”;“ I had no idea. You look normal” - there are a lot of unhelpful phrases out there that Kristy and I have heard in our private battles of managing an invisible condition. We also bonded over another important thing - the need to educate to promote kindness.
I can’t thank Kristy enough for her vulnerability and bravery in sharing her painful and private story with me so that others may get the help and support she never had.
What does your pain look like?
During my first photo shoot with Kristy, I asked her this very question. Having battled debilitating chronic pain myself since 2015, I have come to know the many faces of it, but also the many masks we wear to hide it. For Kristy, we talked about her go-to places when things get rough and when things get really rough. This picture captures Kristy’s go-to spot when seeking relief and comfort in the initial stages of pain when managing her Stage IV Endometriosis.
As an artist capturing this very privileged moment with Kristy, I loved the muted colours; the expression on her face that says it all - like someone who has been down this road many, many times before; the cup of tea; the fetal pose or maybe it is just to hang on; and most of all, the story even her toes say about how her whole body is trying to comfort her whilst destroying her.
“I want workplaces to understand the physical, emotional and mental toll this disease takes on a person. Sometimes ‘fake it till you make it’ results in being found by your manager, passed out under your desk from pain.”
Kristy’s story, along with some of the pictures from this series, was published in the Canberra Weekly Magazine detailing her lived experience and the atrocities she has had to endure.
After everything Kristy has been through, all she wants is to help other girls and women get the help she never had. How can we help? We need to talk about it. Period. Endometriosis is not just a women’s issue - it affects us all.
Media source: Canberra Weekly: ‘Private World of Pain’ Portraits of Endometriosis; 27.03.2023
For further information and assistance, please see: Endometriosis Australia
Shining a Light on What You Don’t See
Kristy suffers from the most severe form of endometriosis that has taken over her entire life, but you wouldn’t know it looking at her on any given day. I was incredibly moved by her story & the sadness of hearing how she often lies on the bathroom floor, alone in the middle of the night, waiting for the pain to stop. For Kristy, having an invisible illness means her reality & pain can be questioned or easily dismissed.
As someone who suffers from an invisible disability myself, I am passionate about shining a light on what people don’t see. Endometriosis affects 1 in 7 Australian women yet most suffer alone - unable to get the help they need simply because they look “normal”. The truth is, we never really know what someone else is going through, but we can always choose to be kind.
“The pain is all in your head”
Endometriosis affects 1 in 7 Australian women yet most suffer alone - unable to get the help and support they need simply because they don’t look sick. Kristy suffers from the most severe form of endometriosis that has taken over her entire life but you wouldn’t know it looking at her on any given day.
Here, I invite the viewer into this private and painful moment, behind closed doors, to lie on the bathroom floor with Kristy and experience her reality that is often dismissed because she looks “normal”. Would you tell her, “The pain is all in your head”?
ENDo THE PAIN
In getting to know Kristy and how she’s been managing her severe invisible disease called endometriosis, I was at a loss as to why I was so in the dark. Is women’s menstrual health still a taboo subject? Why don’t I know more about it? And why aren’t we talking about it?
Kristy has endured 3 major surgeries, had her left ovary removed, unable to have children and left with debilitating chronic pain. After all that, Kristy just wants to help by raising awareness so that other women may get the help and support she never had.
Listen up.
Kristy and I were interviewed on ArtSound FM by local legend, Neil Doody (pictured below) to discuss the images and Endometriosis Awareness Month.
From this body of work, Kristy and I were invited to Parliament House for the Endometriosis Australia Canberra Breakfast during Endometriosis Awareness Month in 2023.
