‘Romance can be complex for those of us with hidden disabilities’

“Is that the technique?”

“Sorry?”

“Is that the technique for testing pillows?” he winked at me with his soft brown eyes. I smiled.

Chronic illnesses are rarely considered sexy but here I was, sent by my GP to buy a specialist pillow for neck pain, flirting in Arnotts pillow section with a fellow shopper on a Sunday. We are all in the gutter but some of us are looking for expensive bedwear.

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I developed a chronic health condition at the age of 15, so when it comes to dating there is no ‘before and after’ (save a few rogue Gaeltacht pógs); my hidden disability has been a constant in my romantic life.

Until quite recently, when it came to dating, my approach was to ensure a level of ignorance with regard to my disability.

I chose to hide my illness from the other opting to appear normal, whatever ‘normal’ is. Perhaps after a period of time, I might mention “being a bit tired” or “having a migraine”, drip-feeding information as the mask wore thin. I didn’t want the other to be scared by the darkness and despair of the reality. Or I was just embarrassed.

This phenomenon isn’t unique to those with disability; a lot of us hide what we consider to be our undesirable traits when we first meet someone new. Packing the wardrobe until it all tumbles loose. I guess it is unfortunate though to believe that a disability makes us undesirable.

I have often thought forlornly that my hidden disability is such: hidden, invisible to others.

“You look so well.You seem so happy.”

While well-meant, such comments can seem to invalidate our suffering. But when it comes to dating, this invisibility can also be advantageous. At times, dating has been a form of escapism. I choose to tell as much as I want to tell. I define myself in my own terms. Of course, such relationships are fleeting. Without confiding in the other, a relationship of trust will not be built.

To lose yourself totally to love is a challenge. Irregular meals, late nights and alcohol, which so well compliment romance, do not sit easy with defective health. Spontaneous sleepovers mean missed medication. Disrupted routine interferes with health management. Cancelled dates are frequent, and relationships lose momentum.

Bad patches

Ali Smith, in her novel How to Be both, wrote of a bereaved child that "she is not going to get the important boredoms and mournings and melancholies that are due and are owing to her just from being the age that she is, for now it will be interrupted by real mournings and real melancholies".

Being both a bereaved child, and a young person with a disability, I can empathise. While young love, crushes and heartbreak consumed the world of my peers, much of my life and headspace was filled with health concerns, doctor’s appointments, missed opportunities and a strain of heartbreak that I felt no one my age shared. Love felt trivial.

When life throws so much hurt, pain and unpredictability your way, it can be hard to face love with a carefree innocence; to blindly embrace romance and not apprehend yet another wound. This is particularly so when emotional distress can exacerbate chronic health conditions.

Sometimes during bad patches, I exile myself from the realms of romance. Of course, a burst of amour could be just the boost I need but love doesn't always work as such. As Jersey Shore's Mike the Situation so rightly said, "you've got to wade through to weeds to get to the flowers". And I'm already in a tangle.

Having a chronic health condition has taught me to be incredibly protective of myself. Overly so, I imagine. The world can feel quite cruel. Sometimes those two blue ticks hurt just as bad as a migraine and I can’t manage both at once.

As I have got older, I have been more open about my disability. Fortunately, it has been generally well received and relationships have deepened as a result. New partners see my disability without the baggage I carry. They sacrifice pints for caffeine-free dairy-free tea. I stay up a little later.

People can begin believing that the antidote to illness and disability is meaningfulness. Physicians recommend walks in nature and yoga, mindfulness and painting, and while we cannot deny the benefits of these activities, there is nothing as good for the soul as the mischief of the early days of love.

Yes, love and romance can be a little more complex for those with hidden disabilities, or at least that has been my experience. But we are human and so too do we crave love and its excitement and get carried away in its embrace. I didn’t swap digits with Pillowman. But I do have great neck support for when I sleep at night.

For now, I guess I’ll keep dreaming . . .