On a good day, I know there is something special and unique about me. On a bad day, I'm an ugly freak.
I want to share some of what makes me, me. And I don’t want to simply disclose for disclosure’s sake. I think I have a solid point to make.
On a good day I know I shine bright and there is something genuinely unique and special about me. On a bad day, I’m an ugly freak.
On Tuesday I did something I thought I'd never do. Never even contemplated. I spoke in public, at a work event, on a stage nonetheless, about the thing that has shaped me more than anything or anyone else in my life, yet has largely remained so unsaid that if I ever talk about it, I well up. It’s a lot of mashed up, twisting thoughts layering over each other making it difficult to comprehend.
I was scared. I wasn’t worried about getting up there (I like that bit), it was more about the fact that it’s such a big deal to me but maybe, to everyone else, “Who gives a shit?”.
Maybe I was building up to it slowly over time, but actually I put my decision to talk about it down to one flash of a moment. Three weeks ago, whilst climbing out of the shower and seeing myself in the mirror, the vocabulary to describe my relationship with this disfigurement, this huge port wine stain that has secretly dominated my life, popped into my head out of nowhere, clear as day.
“Every single day of my life for as long as I can remember and including today and tomorrow, I spend some level of energy coping with this. Coping with it, sometimes hiding it and definitely acting as though it doesn’t bother me.”
But on many days, it does. And the thing is, that’s okay.
As I’ve gotten older, the physical side of my syndrome is becoming more and more real. Chronic back pain, heavy and painful limbs some days, vascular issues and way too many people needed to deliver my kids… just in case it went really tits up. Like “You could die”, tits up. Luckily I was far from that and genuinely, I am able to just get on with it. I am lucky. Defo.
Ironically, all of that has been nothing to me in comparison to a so-called ‘disfigurement’. A red mark, nothing more than that, doesn’t feel rough to touch, doesn’t hurt to touch, literally just the colour of my skin that makes me stand out in a crowd. Makes me different.
Sometimes dealing with it is just a passing thought, trivial and barely noticeable, requiring little energy. Other times I can fall in to a pretty dark hole of self-pity and/or fear. Irrational fear of people’s reactions if they see my birthmark or fear of how my condition could worsen over time for me physically. Often it’s somewhere in the middle, closer to the passing thought end of the scale, but just enough to shape who I have become over time.
I remember going to Vegas for a work trip (a hard life) and getting ready to put on my bikini to head to the pool and meet our clients. A pool full of mainly big-dog, beer drinking, alpha male trading directors and other heads of businesses with whom I'd built relationships with to ‘earn’ an equal footing. A group that I liked and respected. Confident, cool and completely capable - that’s who I was in front of them.
Sitting half naked and ‘owning it’ is hard enough for most people but I always feel pretty fucking vulnerable in that situation particularly with people who know me but just don’t know this about me. Is anyone gonna stare? Is anyone gonna say anything to me? How (un)attractive do I look? How can I make them feel comfortable with it?
Most of the time I just get on with it and recognise that these are my issues rather than those of my friends or my colleagues. I push the fears aside (because what’s the point of not?) and crack on.. I walk out the door, order a poolside pina colada and party on. I’ll ignore the occasional stares and low-level hum of self-consciousness and amplify the actual real-life LOLS I’m lucky enough to enjoy.
And that’s kind of the story of my life. I have a good life. Don’t make a big deal out of it (even though it is). Don’t make a fuss. Hush the negative vibes and crack the fuck on.
As much as I wouldn’t recommend not talking about stuff like this, (a) I’m starting to now and it’s proving to be ridiculously beneficial, and (b) I’ve realised it’s given me so much that I could never have otherwise - experiences, character and superpowers that mean that there really is something brilliant and special about me.
And that’s where it is worth you giving a shit. Not about me necessarily, but about people like me.
I create a space for people to feel like they can be themselves.
I’m fiercely independent.
I’m empathetic and I listen.
I can inject energy in to a room (even when I'm not feeling too great myself).
I’m extremely passionate and can inspire others.
My conviction gets things done.
I make it easier for people to have difficult conversations.
A can-do attitude is second nature,
But I’m aware of my own insecurities and inadequacies, so I’m not an arsehole.
I judge people on who they are, not how they look.
I’m competitive. I like to win a lot but I don’t want you to lose against me.
The equity and value of hiring diverse employees is real.
Obviously I am not perfect, nor solely ‘special’. I have serious flaws and I can act up.
However, I’m thankful to a new friend I’ve recently acquired who went all deep on me and quoted some Buddhist monk from somewhere or other… “Suffering is the source of our purpose.” And she then went on to say “... and if it is, what superpowers does it give us?”
That’s what sealed the deal for me. I now realise that it’s time to share a few of my experiences, talk about this more and ask you to share it too.
I’m hoping at least one of three things might happen:
You start to imagine what your organisation could achieve if you hired more people with their own superpowers. The equity and value of hiring diverse employees is real. Believe.
People continue to discover the impact of personal stories in this space and so tell their own.
From a personal point of view, maybe just one other person out there, one young girl, will realise that she’s not an ugly freak and that the secret niggling thought she has on her good days about shining and being genuinely special, are probably true.
Note from the author. I have a rare disease called Klippel Trenaunay Syndrome. According to google, ‘Klippel-Trenaunay (klih-PEL tray-no-NAY) syndrome ― also called KTS ― is a rare disorder found at birth (congenital) involving abnormal development of blood vessels, soft tissues (such as skin and muscles), bones, and the lymphatic system. The main features include a red birthmark (port-wine stain), overgrowth of tissues and bones, and vein malformations with or without lymphatic abnormalities. Although there is no cure for KTS, the goal is to manage symptoms and prevent complications.’
Symptoms and severity of KTS vary for each patient. It’s important to say that I’ve lived a very normal life in comparison to many who suffer more and I’m super grateful for that.
Elaine dela Cruz is the Co-Founder of Project 23, a performance consultancy on a mission to make media a fairer, happier and more productive workplace.