health

'At 15, I had severe period pain. At 19, my body was betraying me in the worst way.'

I grew up, for the most part, as an able-bodied person. Somewhere around the age of fifteen, I started experiencing severe period pain. More than a decade later, I’m a woman in her late twenties with a condition and a list of unexplained symptoms longer than the scrolling text at the start of a Star Wars movie.

Officially, it’s chronic nerve pain in the pelvis, vulvodynia, vaginismus and mast cell activation disorder. Truthfully, it’s been years of wasted youth stuck in doctors’ offices, being told that something’s wrong with my nerves but nothing concrete, even after enduring every available procedure with the suffix -oscopy. Treatment and management are a stab in the dark, with more plot holes than the aforementioned Star Wars movie.

As a maladjusted youth I had to forgo the rites of passage – parties, partners and periods – that take up your teens and early twenties, so I am used to the word ‘resilience’. Acquaintances marvel at my resilience. Resilience is equated with bravery, as in ‘you are saaaahhhhhh brave’ for struggling against the odds.

People think you are born emotionally tough, with some inherent or genetic ability to go the distance. I want young people like me to know that resilience is different for the able-bodied, and the reality – the truth of staying strong when faced with barriers – is that it doesn’t occur as naturally as one might think.

Inevitably, you will need to hold two kinds of umbrellas: one against a torrent of people, and the other against the pelting rain of yourself. It’s not the storm that will overwhelm you in the end: it’s the rain – gradual, drop by drop – that can threaten to take you under.

The people umbrella is neon-pink with fantastic sparkles. It’s so bright and cheery it’s almost ironic. You need it to face all the well-meaning people who say you can cure endometriosis with yoga, or the nosy colleague who serves you a backhanded compliment about how well you seem. It shields you from the people wanting to tell you about their own experiences (or those of someone they know tangentially, or have just heard of) because they don’t know how to react in a positive, understanding way to the news that you have a disability. This is not their fault. It’s how humans connect. But it’s a kick in the teeth to the girl who’s just found out she needs to freeze her eggs at age twenty-two. Hearing how someone else struggled or triumphed is rarely constructive.

So as you open your glittery umbrella of resilience in these moments, here are some tools to help you endure: quickly direct the conversation elsewhere; an easy smile can end the interaction.

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During the first year of my chronic-pain journey, I was so desperate for answers that others’ tips and stories filled me with hope. But over time, as the deluge continued and none of these ideas worked for me, I had to get out my umbrella. I’m not suggesting rudeness when you face unsolicited medical advice or well-meaning compliments. Instead, be aware that this is a storm that never ends and equip yourself with the proper glittery protection.

Listen: Mia Freedman chats to Carly Findlay, editor of Growing Up Disabled in Australia on the No Filter podcast. Post continues below. 

The second umbrella is needed when saving yourself from... well, yourself. This might be pessimistic, but I think it’s realistic to be prepared for the possibility that your health will go south, or you’ll have a flare. Depression and anxiety go hand in hand with the grief of living with ongoing health crises. I have been emotionally crushed during medical appointments, in a state of shock for two days, or crying immediately at the familiar injustice reigning within my body. And because of those moments, I have learnt that we all need to hold a little black umbrella. Maybe this one is tough, like leather, or comforting, like soft velvet. Whatever style your umbrella takes – hold it strong against yourself.

When I was 19, my body was betraying me in the worst way: I had pain in my vulva and vagina, even though I hadn’t ever had penetrative sex. That betrayal was nothing compared to the utter devastation and shame I felt as a doctor made an offhand comment that I shouldn’t have had this transvaginal ultrasound if I was a virgin. Looking back, perhaps he simply meant he would have been gentler in administering it if he’d known this in advance. I had fully consented, and yet my world tipped upside down with this one stray remark. Was I a bad girl? Had I destroyed something pure inside me? The answer was no, but I didn’t believe that, not for a long time.

Awful experiences, in which you and all you stand for are laid bare, prepare you for this resilience against yourself. I know now that I may emotionally break down during appointments, so I have better strategies in place, such as calling a support person and going to counselling. I am not to blame for those bad experiences.

But I raise my little black umbrella to make sure that metaphorical hail doesn’t hit me smack-bang in the face.

Your little black umbrella might indeed be a stiff drink some days. It might be a call to a crisis hotline. It might even be talking to a friend or getting a hug from someone you love. Your little black umbrella is there when your health turns ill, or your mind, or both.

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Resilience is not a virtue you’re born with. Unlike disability, it’s not congenital. Unlike mental illness, it’s not genetic. It’s not diagnosable and it’s not prescribed. It’s sure as hell not on the PBS. It’s something you learn in the face of adversity. Growing up disabled means you experience adversity – whether physical, mental or social.

But you and I can make a pretty cute pair, standing strong with our umbrellas in the rain.

Emma Di Bernardo is a bespectacled writer and speaker from Queensland. She is a women’s rights, LGBTIQ+ and disability advocate. Emma’s non-fiction work has been featured in The Undergraduate Journal of Whedon Studies, Disability in Kidlit and One Woman Project.

This is an extract from Growing Up Disabled in Australia, edited by Carly Findlay OAM, published by Black Inc. Books. Available where all good books are sold. 

Image: Supplied.


Feature Image: Supplied.