We’ve said it before and we’ll say it again… we love connecting with you, getting to know you and sharing your stories.
Today we’re honoured to introduce you to Elle. Elle is 28 and lives in beautiful Australia. She was diagnosed with High Grade DCIS last year when she was just 27 and underwent first a lumpectomy and then a double mastectomy.
In addition to raising money to help researchers in Australia find new and more effective and less invasive ways to detect and treat breast cancer, and putting together care packages for women in hospital who have had surgery or are undergoing treatment, this amazing young woman is currently writing a book filled with open letters from women to their breast cancer which she plans to sell to raise funds for NBCF Australia.
Elle has written a wonderful blog for us today describing her story and her relationship with her body.
“Like many women, I struggled to love, accept and appreciate my body just as it was through my teenage years and early twenties but when I was twenty-four, I started, slowly but surely, to build a healthy relationship with my body. I would look in the mirror and trace the curves of my waist, hips and legs with my fingers instead of squeezing the squishy bits in an effort to
essentially do what my mind wished I could do – rip them off.
The relationship with my body changed many times over the next few years.
I struggled but I was able to accept the changes so much easier than I could before because this body I was in was mine and nobody else in the world had one exactly like it. How cool is that?
After being diagnosed with a rare autoimmune brain disease at 25 I was put on a cocktail of medication to control the inflammation in my brain and spinal cord and to stop the disease from attacking my body. As many medications often do, these too came with side effects.
The steroids I had pulsed into my body intravenously over 3 days eventually led to me gaining 20kgs as well as developing Type 2 Diabetes and Osteoporosis.
I would look in the mirror at my puffy, acne ridden face and I didn’t recognise myself. I hated looking in the mirror.
None of my clothes fit me anymore and even those that did felt tight and uncomfortable but no matter how much I adjusted my clothes I couldn’t adjust the extra weight on what was essentially my whole body.
My skin burned and pulled from the stretching and I had deep, painful red and purple stretch marks covering my hips, inner thighs, inner arms and breasts.
It took a while but over time I would begin to feel these stretch marks with the same compassion and love that I felt my hips and legs before I started medication and gained this weight.
I started to dress up again instead of covering up, I found new and different ways to let my body just be and to encourage my mind to stop being so critical and to start being more comfortable.
It seemed that people around me were more offended by my body than I was, and this was conveyed in both subtle and not so subtle ways. I realised that I was living a very privileged life in many ways, but one being that I wasn’t judged or condemned because of the size or shape of my body up until now.
It became more apparent to me now than ever before how harshly people, especially women, are judged based on how they look, how much space we are told to take up in the world, both figuratively and literally and how uncomfortable people were with anything that was outside of the box of what is expected of a woman and her appearance. Stay small, in every way possible.
It also became obvious to me how quickly people make assumptions about your life based on the size and shape of your body. I knew my weight had changed purely because of medication but I also knew that even if that wasn’t the reason it changed, my body was nobody’s business but my own, and the reason it looks the way it does has absolutely nothing to do with the essential and important parts of what makes me who I am.
Now, keep everything I’ve just written in mind because every last bit of the story I’ve told you about learning to be kind, compassionate and accepting of my body and mind is about to change, almost to the point of non-existence.
It was Breast Cancer Awareness Month here in Australia. I noticed some symptoms in my left breast that were persistent for about six weeks but as most women do, I convinced myself it was nothing that needed attention, it was probably just because I was due for my contraceptive injection, it was hormonal, I even convinced myself for a little while now that it was in my head.
My experience when trying to get a diagnosis for what I now know is an autoimmune disease, was traumatic to say the least. I was told on multiple occasions by multiple specialists that my symptoms and my illness were “in my head” so, why would this pain in my breast be any different?
As I was buttoning my pants up just after the nurse had given me my contraceptive injection, I nervously babbled out what could only be explained as a ‘word vomit’. I told her all about the symptoms I had been having in my breast, why I didn’t have it checked, that it was probably nothing but please can you check it because I’m secretly shitting myself about it…
I have a long family history of breast cancer affecting my maternal aunt and two of my great aunt’s but I thought the separation in the family tree was enough branches apart for me to never be the one sitting across from my doctor being diagnosed with breast cancer.
Women my age don’t get breast cancer. Ah, to be young and naïve!
Fast forward to October 15th, 2019 and after an almost four week wait, a mammogram, ultrasound and two biopsies I sat across from my GP and had my world torn apart.
Here I was, 27 years old, barely a twig on the family tree, being told I had High Grade DCIS in my left breast.
I don’t feel like I’ve moved out of that day, it feels like the weeks and months in between that moment have moulded into one messy, traumatic and life-changing day that is broken up by meals and sleep. It has felt like I’ve just been existing, just moving through each minute but not feeling anything but the shock of the few words every woman fears.
In December 2019 I had a double mastectomy, three weeks after a lumpectomy with no clear margins. Between my double mastectomy and my lumpectomy, I had a massive 10cm of cancer removed from my left breast and I never had a lump.
I remember the pain when I woke up, both physical and emotional. It was deep and aching and I longed for my breasts. Part of me that nobody else in the whole world had was now gone and never coming back.
The loss of my breasts felt so much deeper than a physical loss and felt so much more than a loss only I was forced to bear.
I grieved the loss my parents must have been feeling, to watch the body of their daughter, a child they created together out of love, a body they watched growing from a child to an adolescent to a woman. A body my mother grew, and one both my parents held and nurtured for 27 years was now being taken apart so I wouldn’t be taken away from them entirely.
I looked at my sister, Grace, wondering what she must be feeling seeing her sister go through this. Despite my pain all I wanted to do was protect her like I have every day, month and year before I was diagnosed but now, I watched, feeling like I had failed her, as she was thrust into the role of protecting me.
I can no longer bring myself to refer to my breasts as breasts so instead I refer to that part of my body as my chest. Just as I did when I gained weight, I no longer recognise myself when I look in the mirror. I feel completely disconnected from my own body, and this time as much as I try, tracing lines over my chest is a fruitless exercise to show myself compassion or even get to know this new version of myself because I can’t feel my own
touch. I can’t connect.
I’ve had to meet and welcome new versions of myself so many times in the last few years, and the first few times I welcomed her with open arms, but now? I don’t know how to let this new me live without grieving. I don’t know how to feel like I haven’t been completely robbed, I don’t know how to feel anything but grief or anger. I don’t know how to be gentle or compassionate or even a little bit okay with this new me.
This new version of me continues to challenge me in ways no woman should ever be challenged and my heart aches to know that despite this, there are thousands of women just like me, all around the world, feeling challenged, defeated, broken and disconnected from themselves.
This ache, although painful, draining and at times all consuming, is the reason I will fight, forever, for every single woman before and after me with a breast cancer diagnosis because no woman should ever have to say goodbye to part of herself when they were just learning to say hello.”
Thank you so much, Elle, for sharing your heartbreakingly honest account of your evolving relationship with your body and your self-image. We felt every word.
You can find Elle on Instagram @breastiesforlife