Words by Maz. She/her| Images by Sky Sirens Creative Team

CW: Medical Gaslighting 

My breast implants are making me sick. This is a deep dive into my experience living with BII and navigating an illness that is medically non-existent. 

I’m writing this in the midst of one of my many migraine attacks, which have become all too familiar for me over the last six years. Today, some of my favourite things - the warm light of the afternoon sun flooding my living room, the smell of fresh laundry drying from my balcony, the sound of birds flocking to my neighbor’s porch while she sets up to feed them; are all nauseating. As the pain sets in, I recite a mantra that unlike my medications, actually seems to work. I say it to myself, over and over until I finally feel comfortable with the reality of the next 72 hours. From the sofa where I lay with my eyes shut, I dictate notes into my phone. 

In 2015, I underwent breast augmentation surgery and was implanted with 325cc textured silicone implants.

In the lead up to my surgery, I was informed of some of the associated risks, which were predominantly related to the overall appearance of the breasts post-operatively.

This included capsular contracture, asymmetry, rippling, stretch marks, symmastia, breast ptosis and scarring. The medical risks I was made aware of included infection, bleeding, changes in tissue sensation and issues related to anaesthetic administration. I was never told about the myriad of health issues I could potentially live with forever. Breast Implant Illness was never discussed, because to this day, it is not medically recognised, classifiable or diagnosable. 

In July 2019, the Food and Drug Administration (FDA) recalled a large number of Allergan Saline and Silicone Implants and expanders. I wasn’t aware of this information until June 2020, when articles were being shared among the BII support groups I was a part of on Facebook. I remember clicking on a link and being diverted to the FDA website, where I nervously scrolled down a list of Allergan implant models. I stopped at the second last one on the list which read: Allergan Silicone Filled Textured Implants - style TSF; my implants. As panic set in, I wondered how it was that the implants inside my body has been recalled, and no one had contacted me for nearly a year to let me know. As I continued investigating, I uncovered that the Allergan implants that had been recalled, included only devices that were not implanted and any devices that were implanted, were excluded from the recall. The following advice to surgeons is information taken directly from the FDA website, which to me, speaks volumes of the issue at hand. 

“You should immediately stop using (implanting) Allergan BIOCELL breast implants; and work with your facility to return existing inventory. At this time, the FDA does not recommend removal of these or other types of breast implants in patients.” I mean… what the fuck? Further to this, in September 2020, the FDA released a guidance document advising that all breast implants would now come with a black box warning (most serious FDA warning), which stated that these devices were directly linked to the development of Breast Implant Associated - Anaplastic large cell lymphoma (BIA-ALCL), which is a Non-Hodgkin lymphoma. 

I first discovered BII in January 2020, and at the height of the COVID pandemic in Sydney a few months later, I used my lockdown time to dig deep into the condition I was living with.

Digesting the fresh information, I became aware of the extent of yet another global issue, which in my eyes, was all but being covered up. With every new alarming piece of information that came to light, I would unload on my housemates who helped rile me up and say things like “take this shit to Netflix”. As I lay here now, I pull up Google Chrome and search for Breast Implant Illness symptoms and then click on Images. The first image to come up is one with black font on an alarming blue background, which in my current state, causes me to squint to where my eyes are barely open.

The paraphrased list reads:

• Chronic fatigue

• Brain fog, difficulty concentrating, memory loss

• Muscle pain and weakness

• Joint pain

• Hair loss

• Weight issues

• Inflammation

• Insomnia

• Visual disturbances

• Thyroid disorders

• Hormonal imbalance

• Changes in libido

• Poor healing

• Swallowing/choking issues

• Gastrointestinal/digestive issues

• Fevers, chills or night sweats

• Persistent bacterial or viral infections

• Recurrent fungal or yeast infections

• Skin rashes

• Auditory issues

• Food intolerances or allergies

• Migraines

• Heart palpitations

• Sore and aching joints

• Swollen lymph nodes

• Numbness/tingling in upper or lower limbs

• Shortness of breath

• Anxiety and depression

• Feeling like you are dying

• Fibromyalgia

• Lyme disease

• Other auto-immune diagnosis such a rheumatoid arthritis, lupus, Hashimoto’s etc.

• Breast Implant Associated Anaplastic Large Cell Lymphoma

From the list above I count 14 symptoms that either intermittently or persistently impact me.

Due to the inability of receiving a formal diagnosis or there being any evidence to support appropriate intervention for people living with BII, we are generally treated at an individual level for symptoms which predominantly impact us, or disorders which most similarly align with our symptoms. I have been medicated for my health issues for close to six years, however, it wasn’t until January 2020 that the link between my symptoms and BII became all too clear. Between the period of January 2020 and October 2020, I began investigating explant surgery, after seeing thousands of people living with BII, posting of their successes following complete capsulectomy (implant and scar tissue removal) in the community Facebook groups. I saw photos of people who were bed ridden for years, some even given a dire prognosis and being told they had only months left to live, making immediate recoveries post-explant. I saw people sharing their stories and photos of inflammation in their bodies resolving within the first 24 hours post-explant and experiencing complete eradication of their symptoms in the weeks following surgery.

For the first time in years, I felt hopeful that one day, I too could feel vindicated about the root of my health issues, like the brave people in those posts. So started the next phase of this ever-changing nightmare.

In October 2020, after 10 months of mental preparation, I picked up the phone and made a call to a Plastic Surgeon’s office to attend a consultation for an explant. For the next three months while I awaited my appointment date to arrive, I eagerly investigated the surgery in depth and compiled a list of questions about how my body would change, what possible lasting impacts an explant could have on the way my upper body functioned (as a dancer, this was a primary concern), as well as how best to prepare myself for healing post-operatively. I had also been saving money for the surgery, which would incur an out-of-pocket cost of approximately $15,000.00. Since the recall of the implants excludes any device which has already been implanted, Allergan are not liable for covering costs associated with explant surgeries. I booked my consult with a surgeon who had been a vocal advocate for the BII community and had spoken of his belief that the illness was well and truly real. Unfortunately, I was not met with the supportive and optimistic surgeon I had heard so much about. After leaving his offices I immediately messaged my best friend “that appointment was so fucked. What a letdown. I feel so much worse”. I explain that with an air of arrogance he began to tell me of the thousands of women who were making up stories about an illness that didn't exist and without any evidence, began spreading lies in Facebook community groups. He told me that the explant surgery was extremely downplayed, and that people were not aware of how risky the surgery was. He told me he would almost certainly puncture my lungs, cause me to internally bleed and as though this had shit-all to do with anything, told me that all my future partners would be “dissatisfied” with my body, causing my relationships to end. He told me I was young, and wrong to be considering an explant, which would “ruin” my body for others. Despite my story, he failed to see how my body had already been ruined for me. After close to a year mentally preparing to even pick up the phone and book a consult, the outcome of that experience was so scarring, that to date, I haven’t had the mental capacity to try to seek further input from another surgeon. 

I do miss all that my body could do physically before I became unwell. I miss holding down full-time employment, I miss being able to exercise for fun rather than as a luxury, I miss how far I was able to push my body with my training and the goals I had, which feel further and further out of my reach. Having BII has been a process of mourning my old body and its capabilities and learning to live with my limitations. I have been on the side of toxic positivity where I refused to let my illness impact my life, which only left me feeling more unwell. I’ve been learning how to do less in order to preserve energy to engage in the things most important to me. To help me live a meaningful life, despite my illness. Living with BII has helped me to appreciate each day that I wake up without pain, each day that I can have a spin in the studio, each day that I am able to get dressed and put on a perfume, listen to my music loud and just look up at the sky on a sunny day without aggravating my symptoms. 

I encourage people who resonate with the information here to link in with the BII communities online and to read about other people’s stories. I can attest to these groups being comforting and informative. They have always felt like safe spaces to refer back to when I felt gaslit and isolated, living with a medically non-existent illness. As a final note, I would like to clarify that not every person with breast implants is living with BII, nor do people have to identify as having BII if they experience any changes in their health while having implants. This is my individual experience and what makes one person more susceptible to the illness over another is still largely unknown. I have linked some of my commonly used resources below and hope that for someone else, they might be helpful too.

Breast Implant Safety Alliance - https://www.breastimplantsafetyalliance.org/

Explant Liaison - https://explantliaison.com/breast-implant-illness-resources

Healing Breast Implant Illness - https://www.healingbreastimplantillness.com/explant/

Study by Dr Lu-Jean Feng - https://journals.lww.com/annalsplasticsurgery/fulltext/2020/07001/understanding_breast_implant_illness,_before_and.19.aspx

Breast Implant Illness and Healing - Facebook group

Breast Implant Illness Awareness and Support (Australia and NZ) - Facebook group