Dating with CRPS and chronic pain: my experience

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It’s a sad truth that a chronic pain diagnosis takes its toll on your close relationships. It’s not just you that’s affected; your friends, family and everyone around you also have to learn to deal with the impact of your illness. Sometimes the adaptations required to live with chronic pain aren’t too great, but if you develop a condition like Complex Regional Pain Syndrome, it can lay waste to the best laid plans and render your life unrecognisable.

One story I’ve heard far too often is that of relationships breaking down under the strain. My own did; two years after my diagnosis of CRPS my partner of eight years upped and left me. I never got an explanation of why he didn’t want our relationship to continue. In retrospect, I think he simply couldn’t deal with the massive change in who I was and especially the amount of support I now needed from him. Before, I was able-bodied, full of energy, professionally high-flying, staunchly independent and pretty much unstoppable once I’d put my mind to something; after CRPS my life fell apart, with each of those pieces peeled away one by one. By the time we got down to my absolute core, I don’t think he much liked the bits that were left.

I was devastated at the time. CRPS had already stripped almost everything from me: my mobility, my social life, eventually my job. This relationship was the only thing I had left from my former life and although it hadn’t really made me happy for some time, that didn’t matter; it was the one and only piece of who I used to be that I still had, and that meant I would hold onto it at any cost.

Looking at it from where I am today, him leaving was one of the best things that’s ever happened to me. Seriously. Honestly. That’s not sour grapes or revisionism talking, that is absolute 100% truth. Bear with me and I’ll explain why.

After getting over the immediate shock and loss, I slowly began to realise that maybe this wasn’t as awful as I feared. To be clear, I believed that that was totally IT as far as any future relationships went; I genuinely couldn’t imagine anyone ever wanting to be with me again and I was preparing myself for spending the rest of my life on my own.

As part of that preparation, though, I decided I had to try before I let myself give up. Regardless of my gut belief that I was no longer in any way desirable as a partner, I knew myself well enough to know that, in order to allow myself to give up, I had to have at least tried to see if there was another relationship out there for me. So I screwed my courage to the sticking place and signed up for eHarmony, an online dating site. My friends and family were pretty worried about me at this point. I’d only been dumped in August and it was now the New Year and I was proposing already sticking my toe back into the dating pool; how would I cope with the hard realities of the London dating landscape? How would I deal with further rejection? Was this in any way a good idea?

The secret was, of course, that I was expecting nothing except rejection. When you have no hope you have nothing to lose and this made me bullet-proof. I was merely going through the motions; nothing was ever going to come of it. Turned out I was wrong. Boy, how I was wrong.

On the sixth day the man who is now my husband emailed me. I’d had other messages that I’d ignored, but something about this one intrigued me. Maybe it was the way that his photo showed him looking ridiculous dressed up as Doctor Who in a fez and bowtie to amuse his daughter, rather than the many many scrubbed-up-black-tie-at-a-wedding photos I’d seen on other profiles. Maybe it was the honesty and character in his writing, where I already got a feel of this man coming through his words. I don’t know. What I do know is that his message broke down the walls I’d built around me and I knew that he was worth trying to get to know.

I didn’t put details of my illness in my dating profile. That would probably be controversial amongst people with disabilities. I didn’t lie about it, but I didn’t put it front and centre because, fundamentally, I don’t believe it’s the most important thing about me. Yes, I can’t walk and yes, I’m in constant pain. Yes, my illness curtails a lot of what I could previously do. But is that the most essential thing to know about me? When you only have a couple of hundred words to describe yourself, do you use up 100 of them talking about an illness? I decided that there were other, more significant things for people to know about me at first.

It was, though, obviously vital that any future date knew about the complications and in my first email to Ben, I explained the situation and made it very clear that if he wasn’t up for it then there would be no hard feelings at all. I then sat by my computer constantly refreshing my email until he replied (luckily he did so within an hour or it would have been a very long night). I will never forget his response: “although there are many things that I’m looking for in a partner, a full set of working limbs is not one of them”.

And that was that. The rest is history, well, my personal history, at least. From initial emails, we went to texting all day every day. When we finally managed to organise a date a few weeks later we talked and talked and the time genuinely flew; before we knew it, we were the only people left in the restaurant and the waiting staff were lined up along the counter, desperately hoping we’d go home soon. We ended up having 4 dates in that same week, with me meeting Ben’s daughter, Lara, on the fourth date. We were engaged at 6 months, I moved in with Ben and Lara shortly afterwards and we were married a year later. It’ll be our second wedding anniversary in November.

My life has never been better. I have never been happier. I am actually happier than I ever thought I would be. These are not statements I ever thought I would make after the onset of my CRPS. Of course, it’s not been plain sailing. Living with CRPS either as a sufferer or family member is not easy, and you have to learn to compromise, learn that certain things can’t be done and others can, but you need to be flexible on how you get there. I can see that my pain cuts Ben and Lara almost as deep as it does me; I know both of them would do anything for there just to be something they could do to help. They’re both slowly accepting that actually, that thing is just being them and being there. Our life together will never look quite the same as that of other families, but you start to understand that really doesn’t matter; making the most of each other and the time you have is all that counts.

Most importantly though, CRPS or chronic pain doesn’t have to mean you’ll be alone forever. If you’re brave, open to new experiences and lucky enough to find the right person, you can have a relationship that is as meaningful and fulfilling as you’ve ever dreamed. In my next article I’ll be writing about how you can go about doing just that.

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