01 Sep 2022

Mahalia Handley: How PCOS impacted my body image

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Polycystic Ovary Syndrome (PCOS) is a complex hormonal condition that impacts approximately 15-20% of women and non-binary people of reproductive age.

PCOS can impact fertility, as well as cause irregular or skipped periods, cysts in the ovaries, weight gain, hair growth on the face and body, and baldness.

PCOS can also have effects on mental health – emerging research demonstrates 54% of people with PCOS also experience body image issues, and one in three experience low self-esteem.

People with PCOS are frequently told to diet to lose weight to manage their condition. They may also be told to restrict carbohydrates to control their glucose levels. This focus on body weight and dieting, combined with low self-esteem, may leave people vulnerable to the development of disordered eating or eating disorders.  While one study suggests 18% of people with PCOS will also have an eating disorder, another study found that people with PCOS were up to 60% more likely to have an eating disorder than those without PCOS.

In light of World PCOS Day on September 1, Maori/Irish-Australian model Mahalia Handley shares her lived experience of PCOS, Body Dysmorphic Disorder (BDD) and disordered eating.

Trigger warning: The below lived experience story mentions suicide ideation, weight stigma, and eating disorders, and may be triggering for some readers. Call 1800 ED HOPE or Lifeline on 13 11 14 if this impacts you.

How PCOS impacted my body image

“It’s hard to give yourself love when you constantly feel and look bloated, run on minimal energy and are in a state of suffering/disassociation. It’s also hard to accept that your body is any less different to others when menstruation seems simple and easy to multitudes of women.

How do you speak about something that deeply affects you when the conversation is stigmatized and shunned? For years I felt disconnected to my body and it made me feel disconnected as a living human.

The way PCOS played into my BDD made me have intrusive thoughts and suicidal ideation.

What I have learnt is that suicidal ideation comes from the brain trying to shut down and provide a solution, which comes from intense stress; It’s the minds way of attempting to protect. Knowing this now, when it happens, I’m able to remind myself that the stress load I’ve clearly got on my plate is beyond HIGH and that these thoughts indicate I now have to implement and problem solve with my specific routines that I’ve created in therapy.

My PCOS has completely affected my self-image. It did it on a sneaky level – like a robbing during the night, but it was a war that waged for years subconsciously, where in time, I bent the knee unknowingly and surrendered myself mentally and without my consent- which sounds odd right? Because it’s all in my own head.

And while I never wanted any others to feel what I was going through, there was a part of me that thought I could take the weight of the negative feelings and absorb it so that others wouldn’t. If I sacrificed, then maybe another could be saved.

It’s taken me a long time, a lot of therapy and self work to get to a place now, where I feel more comfortable with myself, my thoughts and generally having love towards my own image and self. I’m able to take photos of myself, of my body- for me.

In many ways I think my job [as a model] was a saving grace; it was like exposure therapy that made me challenge the intrusive thoughts in my head. I still can’t look in mirrors for too long and I implement therapy strategies daily to aid the compulsive thoughts that can take over.

Often, I can’t remember what I need because the impulsive thoughts take over. It’s like a radio on loop that never turns off, but it’s screaming at me to “fix” a hyperfocus. It’s in these circumstances that those who care and love me respond with actions I’ve previously asked and consented to help me.

The link between PCOS and disordered eating – and how the medical world can enhance it

PCOS has had a direct impact on my mental health as I had no knowledge on how the syndrome impacts how my body processes different foods and exercise. If I had more information earlier as to how dairy, gluten, sugar, coffee and high intensity interval training workouts affect PCOS bodies, then I know the mental anguish would have been more manageable and I don’t think I would have suffered as intensely as I did with my Body Dysmorphia diagnosis.

Those particular food groups create inflammation and raise cortisol. There would be so many times when I would be attempting to “get healthier” by keeping on a nutritious diet, exercising (with a goal in mind) and changing habits, but I had no comprehension that what I was doing wasn’t suited for PCOS bodies.

These methods often created further havoc internally and my mental health took a turn.

When I would reach out to doctors for help, they would tell me the best way to combat your PCOS is to “lose weight”, “try harder” and just aim to stick me on medication that had a more instant fix but would create ongoing problems for the future.

When you’ve invested so much money and energy into meal plans and training regimens that works for everyone else (who don’t have PCOS) and nothing changes for yourself, it starts to really beat into your brain and create negative thought patterns on your self image and value.

For me, this resulted in the beginning of yo-yo disordered eating habits and binging practices. When you combine this behaviour over years of constant engagement and trickle in media & societal pressures that praise smaller bodies and villainesses those who are fat as lazy, it can lead to catastrophic effects on mental health.

The amount of doctors that have also tried to place me on birth control is excessively high. As well, they always do this before checking what my hormone levels are, which bugs me so much.

It infuriates me that young girls with period pains similar to mine are also being told to just use birth control without tests being conducted first. It’s as if our menstrual health, the things that creates life, is worthy of a band-aid approach.

The amount of drugs and instability I endured whilst following the “doctors ‘ orders” is something that’s created ongoing problems (negative problem solution solving) to this very day.

There is also always the patronizing “concern” about my weight, the part of my bodily function that does not operate like everyone else’s, the innuendo that I just need to get more active.  The fact that I train more than the average person, mimicking close to an athlete’s regime, is often met with ignorant disbelief and is automatically considered a lie, due to my external look and physicality.

Where would I be now If I’d known more information? I think I would definitely feel stronger mentally and less self-deprecating. It would also be comforting to relay that there shouldn’t be commentary on another’s body, especially on the internet or from health professionals.

I wish society knew that your menstrual health does have direct correlations into your body image, mental health and potentially disordered eating.

That the way we perceive ourselves from an external view is a perception forced upon us by others that pretends to be our own ideals…. that the best way to know who you are, as an operating functioning human is to look within, and not in a metaphorical way- in a medical way. The more that we know about how our inner body works, the easier we are able to feel stable.”

Written by Mahalia Handley

Get support

If you or someone you know is experiencing an eating disorder or body image concern, reach out to Butterfly’s National Helpline for confidential and free support from trained counsellors, 7 days a week, 8am-midnight (AEST). Call 1800 ED HOPE (1800 33 4673), chat online or email support@butterfly.org.au 

In a crisis, call Lifeline on 13 11 14 or 000 in an emergency.

Further reading

Related tags: BDD body dysmorphic disorder Body Image disordered eating Eating Disorder Mahalia Handley PCOS PCOS Awareness weight stigma World PCOS Day