As it’s Valentine’s Day we asked you, our community, what you find the most challenging about dating with a disability. You told us things like:
“Dealing with pain and fatigue and them understanding.”
“Not scaring people off with my condition.”
“Honestly everything. But I have thankfully found the most perfect and understanding guy.”
We wanted to share what you said, along with two stories from people dating who are living with a muscle wasting condition – Kiera and Carrie. How Carrie’s long-term friendship turned into something more, and how Kiera has approached her relationship and planning for an accessible wedding.
When you live with a progressive, life-limiting condition, dating is never going to be easy. That’s the blunt truth. But, if you truly love someone, you adapt and find ways to make it work. That may mean long-distance, accommodating carers and accounting for periods of prolonged ill health. My relationship with my fiancé is unconventional and far from ideal. We’ll always encounter barriers. But this is our life, and we choose to navigate the challenges as best we can, together.
I’m 36 and live with Ullrich muscular dystrophy. We’ve been friends for almost a decade and met online through the Trailblazers Facebook group as he also has a disability. At the time, I was in a relationship with someone else, but about three years ago, we started hanging out and realised we had feelings for each other.
In many ways, both having a disability means our relationship is stronger since understand the challenges of living with a disability. We’ve never had to explain things, as you might with an able-bodied partner. There’s natural empathy. However, on the flip side, even though my partner is much more able than me, we are more limited as neither of us can drive and I rely on carers, which makes spending quality time together more difficult.
In the past, I’ve mostly dated able-bodied guys.
“I think dating is generally tough these days, though I’d be lying if I said my disability hasn’t made things more challenging.”
There are practical barriers to consider, as well as the reactions of each person. Some are open, accepting and willing to listen and learn. Others aren’t. Truth be told, as soon as I disclosed my disability, most immediately opted out. I was never resentful, as I believe we all have the right to date whoever we want. And I never had any desire to pursue those who were unaccepting of my disability. Of course, it can be upsetting. I am a very self-conscious person. But dating certainly made me even more so. Which is why I’m glad I’ve found such a great man after dating so many frogs!
I’d describe Andrew and I as I would most other couples, just with a few extra quirks and things we have to consider. Having been together 11 years, we know each other more than we know ourselves and are best friends. This is important in any relationship, but even more so when you live with a disability like mine – we constantly make light out of situations we experience due to my condition.
I told Andrew about my disability around a month or two into chatting online. He really didn’t seem bothered when I told him and began asking all the right questions which was a relief to me. I think if I hadn’t begun to accept my condition, I wouldn’t have been open enough to tell him or even meet him.
We’ve had a few scenarios where we’ve had comments along the lines of “Well done mate – it’s amazing what you do” or “You’re a good man” from strangers simply for Andrew being with me.
“There have also been comments regarding how we shouldn’t consider starting a family as it’ll be too much for Andrew, or that it would be selfish if I was to pass on my condition. We haven’t experienced this much, but it’s rubbish how narrow-minded people can be.”
One of the biggest challenges for our wedding has been finding a venue that ticked all the accessibility boxes. We viewed three venues before we found the perfect one. They were lovely, but all had areas I’d have to compromise on. The venue we’ve booked is gorgeous, but also great for me getting around on the day.
Another challenge I had was wedding dress shopping as lots of the smaller boutiques are not wheelchair accessible. I ended up visiting one of the Wed2B shops, and they couldn’t have been more accommodating – the stores I visited were accessible and had large changing rooms. I had to be vulnerable with trying on dresses and accept losing a little bit of dignity to get the dresses on and off. But I thankfully have some incredible friends and family who were there to support me, and the staff at Web2B couldn’t have been more helpful. I found my wedding dress on our first outing, and the shop I’m using for alterations has been just as accommodating which has made the experience better than I thought it would be. I’m now super excited to get married this summer!
It’s okay to feel out of your comfort zone when meeting new people and trusting someone in areas you may feel vulnerable. With Andrew, and in previous relationships, they weren’t bothered by the things I was worried about. When I first got into a relationship with Andrew, I was worried what he’d think if I asked him to help me off the toilet, but we just laughed about it which made both of us more comfortable, and fast forward to today, there’s no one I trust more.
The right people will see you before your disability – and you’ll navigate a way through the complexities that come with having a muscle-wasting condition.
