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.