The challenge of parenting with CRPS and chronic pain

Parenting is already one of the toughest jobs in the world, right? I don’t suffer from chronic pain myself but still find parenting my ten year old physically, emotionally and financially exhausting. The idea of adding intolerable and unrelenting pain into that already life-crushingly tough equation is, frankly, horrifying.

My wife, however, does suffer from chronic pain. If you’ve read her pieces on this blog you’ll be familiar with her condition – CRPS in her left foot. I know that when I first met her she feared her illness might be an obstacle for any potential partner. That certainly wasn’t the case for me. I knew very early on that this was the woman who I wanted to spend my life with. There were obviously a number of things I was looking for in a partner, but a full set of working and pain-free limbs hadn’t made it onto my checklist.

One thing that was on the list, however, was someone who was right for my daughter. When you’re a single parent raising a child on your own, it’s disingenuous to claim that you’re only looking for a partner for yourself. You’re also looking for a parent for your child. It was an unavoidable truth of my situation and one that was always at the front of my mind from the very moment I decided to hop aboard the dating bandwagon.

From even before I met my wife in person, I knew that I had to be really certain that she was just as much the right choice for my daughter as she was for me. Did the CRPS complicate this at all? Yes, of course it did. My daughter had already had to cope with her mother leaving home. The idea of introducing anyone new at all was, in all honesty, pretty terrifying. The risk that she could be let down again was almost too much to bear. That my wife had a condition which required certain compromises felt like it upped the stakes. It was a choice I could not afford to get wrong.

As it happened, every one of my instincts told me it was the right thing to do and certainly in the years that have followed I have been proved correct (clever me!). Yes, my wife may not be able to do some things that other non-pain sufferers can, but she also offers a level of love and support to me and my daughter than I’m sure few able bodied people could ever hope to match. She is not her illness, and she is a remarkable wife and mother.

There have of course been a few lessons we have had to learn along the way, though.

All CRPS sufferers are experts at putting on a brave face. When you’re in severe pain all of the time you have to learn how to hide it, for your own sanity as well as the sanity of those around you. We tend to view kids as being delicate, so the instinct can be to hide away as much of the pain as possible to protect them. While of course this is necessary to an extent, it can lead to problems. If a parent suddenly switches from being happy and playful to grumpy and absent without warning of explanation, this can potentially confuse or worry a child.

Honesty is the best weapon against this. If a child comprehends your condition and pain levels, and how these things affect you, then they’re far better equipped to understand and accept that their actions are not the cause of any mood swings or changes of plan. If you think today is a bad day then tell them. At the same time, if you’re feeling good then tell them that too. Kids are far more resilient than they are often given credit for and you can be certain that they’ll adapt to any compromises your condition necessitates faster than you will! Trust them to deal with it and they almost certainly will.

That’s easy to say, of course. Parenthood is largely a state of permanent guilt. Are we feeding them right? Are they watching too much TV? Are we showing them enough attention? Are we not pushing them enough at school? Or pushing them too much? It therefore becomes that much harder to feel that you’re letting your kids down by not participating in a promised activity. But the reality of chronic pain means there will be good days and bad days and it’s vital to learn to prioritise. You may have planned two or three activities for the weekend but if playing Minecraft together or doing each other’s nails is the thing they’ll really love the most, then don’t feel bad about backing out of something else to make sure that happens. If your child understands your condition, they’ll understand what needs to be done.

Let them help you, too. Seriously, asking them to fetch you a drink or grab a cushion might feel like a burden, but so many of a kids’ frustrations stem from powerlessness. The vast majority will relish the chance to help and make a tiny difference. The urge can be to keep them at arm’s length and shield them from the impact of your condition, but in my experience the opposite is often best. While you of course don’t want them to be your carer, you do want to be friends with your kids, and friends help one another. Letting them in, even if just a bit, makes the world of difference to you and to them.

I know that for a lot of parents with chronic pain, the thing that weighs most heavily on their minds is the guilt associated with worrying that their kids are missing out. “Why can’t I just play football in the park like the other dads?”, “I just wish I could walk the dog with her like the other mums!” Escaping from these feelings completely is impossible, but the thing you have to remember with kids is that the only thing that is really, genuinely important is that they know that you love them and that you care.

There are plenty of able bodied parents who do a terrible job and there are plenty of disabled parents who do an amazing job. I know for certain that while my daughter is not able to do all of the same activities with her step mum as her friends do with their mums, their relationship is incredible. My daughter loves her very much and would not change her for the world. Get that fundamental thing right and the rest doesn’t matter anywhere near as much.

It’s hard, especially when first coming to terms with chronic pain, to not think of yourself as lesser. The urge to compare yourself to ‘normal’ parents (which is a total misnomer) and dwell on the things you cannot do is a very difficult one to resist. The thing to realise is that all parents – able bodied and disabled – are compromised in one way or another. No-one is perfect and it’s probably fair to say that every single parent judges themselves harshly. The actually quite sad truth is that providing you always act with love, you’re already doing a better job than a lot of people. If what you lack in mobility and activity you make up for with love, care and companionship, you’re never going to be resented, and you can definitely be every bit the parent any child wants.