Finding love with Apert Syndrome

If you haven’t discovered Outlander yet (a historical/fantasy romance about a World War Two combat nurse, Claire, who accidentally falls back in time by 200 years to the Jacobite rising in Scotland and falls in love with Jamie, a young highlander), then cancel all your plans and get binge-watching!

Seriously, when I was having to self-isolate due to the risk of catching COVID, it was Outlanderthat made the days away from my son Elijah bearable.

If I’m honest, it’s the relationship portrayed within Outlander that kept me hooked. 

The series is based on a bestselling book series written by Diana Gabaldon and stands out because, instead of the usual tropes that objectify women or punish female sexuality, it’s a drama crafted for the straight female gaze.

It depicts sex as a normal, natural and matter-of-fact part of a relationship but also shows that intimacy is forged by conversation, shared values, a lack of ego and equal commitment.

Diana Gabaldon has often said that the conversations between Claire and Jamie mirror those she has shared with her real-life husband. Because of this, the relationship feels real and grounded, despite its fantastical premise.

After binge-watching five seasons of Outlander in a matter of days, it’s probably no wonder that I’ve had love on my mind recently.

Today, I want to talk to you about the challenges to finding love – or, indeed, any deep emotional connection – when you have a visible difference.

I am more than Apert Syndrome

As I’ve mentioned in previous blogs, I was born with Apert Syndrome, an incredibly rare genetic craniofacial condition. 

Apert Syndrome is characterised by craniosynostosis (early fusing of the coronal plates in the skull before birth) and complex syndactyly (fusing or webbing between the fingers and toes).

Apert can cause a host of other symptoms and issues but this will vary from one person to the next.

Most people with Apert Syndrome tend to have a smaller mid-face area and shallow, widely-spaced eye sockets. My doctors have often told me that I don’t have classic Apert facial proportions but it is clear that I have a craniofacial difference.

But that’s just my physical body. Yes, I have Apert Syndrome but I’m also passionate, driven, focused, sassy, savvy, a force of nature. 

And I’d very much like to find love one day.

Making lasting connections

I suppose, like most of us, I know lots of people. For me though, the challenge has always been how to turn acquaintances into deep, lasting connections.

There’s no denying that having a visible difference is a barrier. 

I can’t tell you how often people look past me and refuse to make eye contact. They pretend I’m not in the room and talk to anyone but me. When I’m walking down the high street, market researchers with their clipboards will stop anyone apart from me (although maybe that’s a bonus!)

I’ve even had to pull up hospital consultants who, when discussing my son Elijah’s health, have spoken to his carers instead of me.

And, if people don’t ignore me, they sometimes default to staring (something I wrote about in my blog What are you staring at?

Even when I get beyond the initial meet and greet stage with people, I’m aware of two contradictory parts to my personality. 

One side of me hates to be dependent on anyone else while the other half is needy and searches for reassurance. Having experienced a lot of rejection, I’ve struggled to find the balance between going all in with other people, including friendships, and maintaining my sense of self.

How many people in our lives are we truly in sync with and able to share our innermost thoughts with?

It’s probably not that many for anyone.

Finding love in a superficial world

In this world of reality TV and picture-perfect social media feeds, appearances matter. 

They shouldn’t but they do.

While we tell ourselves that beauty is in the eye of the beholder, society drives home a different message, especially to women. 

From the shape of our eyebrows and the perfect pout to the ideal body shape, there’s a template to follow and woe betide anyone who doesn’t fit in with it.

Yes, there are some fantastic body positivity movements out there but they’re currently seen as radical voices, not common place. 

So, where does that leave anyone who breaks the mould?

While I’m not saying that everyone in the modern world is superficial, I think it’s fair to say that there is a huge emphasis on how we each look, especially in the quest to find love.

Think about some of the dating programmes currently on TV. 

Contestants on Naked Attraction are sent home before a potential love match has even seen their face. Love Island features contestants who have taken the beauty template and made it their life’s mission. The Bachelor and The Bachelorette take conventionally “beautiful” singles and pit them against each other to win love.

Deep and meaningful conversations and a lack of tension don’t exactly make for riveting TV. Although, I suppose First Dates stands out from the crowd because of its focus on shared interests and common ground.

First impressions count on dating apps

TV aside, most romantic connections today are made through screens of a different kind – our phone screens.

Apparently, nearly 40% of heterosexual couples now meet via online dating. That’s a staggering figure.

I’ve been dipping my toe into the world of online dating for several years now with no success. 

Apps like Match.com and Plenty of Fish encourage you to post a picture but I’ve stopped doing that because I felt like men looking at my profile were making assumptions about me because they couldn’t see past the Apert Syndrome.

Now I don’t put my picture on dating sites at all. I want people to connect with me based on our interests and values, not appearance.

The problem is that human connections rarely work that way. When it comes to first impressions, we’re a visual species. We want to look the person we’re talking to in the eyes.

I won’t use dating apps for people with disabilities though.

In all honesty, they make me deeply uncomfortable for several reasons. To me, they imply that someone with a disability can only find love with someone else who has a disability. It’s almost as though living with a disability is enough common ground to build a relationship, which doesn’t sit right with me at all.

Or that people with disabilities wouldn’t be wanted or “normal enough” for people without any physical or learning differences. Urgh!

I’ve always been against anything that segregates people with disabilities from our wider society. It was why I resisted Elijah going to a so-called “special” school. I believe that the only way to end the ableism in all of its forms is to integrate people and challenge perceptions.

Undateable? Really?

I absolutely loath the programme The Undateables. It sums up my problem with disabled dating apps.

Unsurprisingly, my first issue is with the title, which suggests that people with disabilities are undateable and, by extension, unloveable unless they stick within their own dating pool. I know it’s meant to be ironic or challenge conventions but I believe it just perpetuates a stereotype.

The programme is voyeuristic, often featuring daters with learning disabilities and making entertainment out of how unprepared they seem for romantic love. 

It doesn’t feel like much progress from the freak shows of old.

The Undateables has the danger of being “inspiration porn” – we’re all meant to be inspired and in awe of people who are able to find love despite having a disability. How remarkable to find someone who actually wants them! (Please note my sarcasm here!).

Dating apps for people with disabilities also risk fetishizing disability, attracting people who sexualise people for their differences. It’s a hard “no” from me.

Open to love

So, where does that leave me?

Beyond dating apps, the next most popular way that heterosexual couples find love is meeting in clubs and bars (27%). However, as a full-time carer, I think my days of dancing the night away are numbered.

Of course I long to be loved. Who doesn’t? 

I want to find a soul mate who loves my fire, strength and zest for life, who can read my emotions and see me as their equal.

Yes, attraction is a key part of a relationship. I want that too. I long to meet someone who will love the very bones of me and not care who knows it.

But that runs deeper than physical attraction, doesn’t it? Even those Love Islanders in the prime of youth and society’s paradigm of “ideal beauty” will age and change shape with time.

Naked attraction alone doesn’t weather life’s storms. What does is the deeper connection, the shared values and common ground, the willingness to put ego to one side.

Society wants us to be perfect but it’s looking at the wrong criteria. Perfect isn’t determined by bra size or eyebrow shape. It’s not about the most Instagram likes or swipes right on a dating app.

It’s about finding the perfect fit for you, whoever that may be.

Ultimately, I’m making a commitment to love and honour myself, to live a fulfilling life and nurture the friendships that matter. 

If love comes, it will be the icing on the cake. If it doesn’t, the cake will still be amazing.

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