Parenting has its own unique challenges: whether it’s broken nights and endless nappies with a newborn; scooping a toddler in full tantrum off the supermarket floor; or negotiating about curfews with a hormonal teenage — every stage and every age brings its own highs and lows. In some ways those of us with psoriatic arthritis (PsA) have already learnt the skills needed to tackle these challenges. Our illness is like an unruly child itself: it wakes you up in the night, restricts your schedule and occasionally throws an irrational tantrum in the form of a flare. If you want to learn to manage it you have to develop patience, flexibility and compassion - skills that all stand you in good stead as a parent.
Of course, there are times when your parenting skills are sorely tested by psoriatic arthritis. Days when everything aches and you feel like you are swimming through syrup become so much harder with a family. Instead of retreating to your bed, you have to grit your teeth and keep on going. But those aren’t the worst days. The worst days are the one when you just can’t keep on going. When you have to say you can’t play chase, or visit the swings, or crawl around pretending to be bear. They are the days that make you wonder whether your child is missing out because mummy or daddy has arthritis.
Sometimes in dark moments, I wonder if my daughter is being short changed because of my arthritis, but then I remember how adaptable she has been. I have no doubt that she is more thoughtful and empathetic than many of her peers. When I look tired or say “I’m sorry I can’t do that” because my joints hurt she doesn’t sulk or pout - instead she bellows “I know, I know” and rushes off to find me a teddy and a blanket. And, she’s taught me a lot about myself and my illness. She doesn’t see my psoriatic arthritis as a medical issue to be solved: instead she accepts it as just part of mummy, and that’s changed my attitude towards it. Here’s what else being a parent with arthritis has taught me:
- Ask for and accept help - this is probably the hardest thing to do. I like to be self-reliant and I don’t generally like telling others about my PsA unless it comes up in conversation but since having my daughter I’ve found it essential to be open and honest about it. Whether it’s asking another mum to lift my daughter onto the swings, or explaining to her swimming teacher why I can’t lift her in and out of the pool, asking for help has made things much easier and stopped me from feeling like my arthritis places limits on us. Almost without fail anyone who I have asked for help, or who has offered help, has been incredibly thoughtful and made activities that would otherwise be impossible totally do-able.
- Don’t let PsA be the “monster under the bed” - illnesses, hospitals and doctors can be terrifying for children. They might worry that mummy or daddy is going to die or be in pain. My daughter used to scream in terror whenever she saw my wrist splints as she somehow thought that they were the thing hurting me. The best thing you can do to help your child is talk to them about your condition and let them know that whilst it can sometimes limit what you can do, it’s not going to take you away from them. Don’t hide too much from them, the unknown can be frightening, but instead let them just see it as part of you. If you have an older child you can explain about your medication, or even let them come along to an appointment so they can ask the doctor or nurse any questions they have. My daughter now loves coming to my blood tests as she gets a sticker and proudly gives me one too for being a ‘brave mummy’.
- Sometimes you have to “let it go” - in the words of Elsa (and chances are that if you’re a parent then you’re a little too familiar with the words of Elsa), sometimes you just have to accept you can’t be a perfect. I used to berate myself for not cooking the perfect nutritious dinner or playing the most developmental games with my daughter when I was flaring. Time and the wisdom of other parents have taught me that sometimes there is “no right, no wrong, no rules for me” and that occasionally there is nothing better than the sofa, a cuddle and some Disney on TV.
This article was written by Kate Lawson, a regular contributor at PsAndMe.com, a social site dedicated to helping the whole PsA community.