Parenting with arthritis: Joel’s experience and tips as a young father with arthritis04 May 2023
Becoming a parent for the first time is an exciting but daunting experience for anyone. But we know that if you have arthritis, you might have some extra questions on your mind.
It’s natural to feel a little nervous, but just remember that so many incredible parents have been in your shoes. Take Joel, 38, who was diagnosed with juvenile idiopathic arthritis (JIA) in his childhood and psoriatic arthritis in adulthood.
Now a wonderful father to his four-year-old son, Dylan, he wants to share his experience navigating parenthood as someone with arthritis. He also offers tips and advice for other soon-to-be parents.
Preparing for the arrival of a baby
If you’re planning to have a baby, it’s never too early to start the conversation with your healthcare team. They’ll be able to chat with you about everything from fertility to medications. Plus, they might be able to refer you to a specialist centre.
“We planned the arrival of Dylan with the help of my doctors,” Joel says. “We had to stop a few things for us to conceive and it was about a two-year process”
Between decorating the nursery, to stocking up on nappies and bibs, preparing for the arrival of a baby can be stressful. But for Joel and his family, it was a particularly challenging time because his treatment was changed. This medication didn’t work for him, which led to a painful flare-up in his heels, back and neck.
“I essentially went from being completely able-bodied to being on crutches,” Joel explains. “It just felt unfair.” Shortly afterwards, the Covid-19 pandemic hit, and Joel and his family were forced to shield themselves. At the time, it felt like an uphill battle but nowadays Joel sees it in a more positive light.
“I'm starting to see the benefits of that time being in a bubble,” he says. “Now the bond we have is amazing and gives me purpose.”
Nowadays, Joel uses his platform to raise awareness of his condition, empower people with arthritis and to make sure their voices are heard. He’s convinced he wouldn’t have turned to advocacy without his son and wanting to be a better role model for him.
Challenges of parenthood: The unpredictability of arthritis
Like many people with arthritis, Joel says the biggest challenge he faces is the “fluidity” of the condition and how every week is different.
“You have to plan and be fairly organised as a parent,” he explains. “But when you're a parent with a disability — especially a disability that's more dynamic and changing — it makes it hard.
“You can have all the best-laid plans and then it just goes completely out of the window.”
When plans fall through, it’s easy to feel guilty. When these feelings arise, Joel urges parents to be kind to themselves and to “try and take wins from the little things.”
“It’s important to remember that [your child] just wants you to be around and present,” he says. “It’s about knowing when to acknowledge that you had a good day, and they had a good day. It doesn't matter if you had a huge plan in the back of your mind, they’re just happy that you were there.”
Being open about your condition
Joel says that it's natural to want to protect your child from the challenges you’re facing. But that he’s found it helpful to be open and honest about his condition with his son.
“Ultimately it’s your call, but don't be afraid to let them in on that journey,” he explains. “Once he was old enough to understand, I felt it was okay to let him know what I’m going through.”
Joel shared his story little by little in an age-appropriate way. Now, when he's struggling, his son will “adapt to it and try to help.”
“There have even been occasions where I’ve said ‘Sorry, Dylan, we can't go to the zoo’ and he'll say, ‘That's okay. Feel better soon'. I think it’s okay for him to know about my pain or when I’m struggling. It helps them understand.”
Pacing and adapting
When dealing with fatigue, it can help to pace yourself. This simply means not using up all your energy in one go. You could also try adapting the activity to make it easier for yourself.
“I quickly learned that we could surprise ourselves with how adaptable we are."
“When I was on crutches and had a newborn, I didn’t know how I was supposed to manage that safely. Then I suddenly found that I had techniques for bum-shuffling up the stairs with him.”
“Now we’ve developed so many games and ways of having fun which involves me either lying on the floor, the sofa, or the bed.”
Show yourself compassion
“We put so much pressure on ourselves as parents. But when you’re dealing with the unpredictability of arthritis, it’s important not to put too much stress or expectations on yourself."
“It’s about learning what doesn’t matter,” Joel says. “I was devastated because I thought ‘I’m not going to be able to play football in the park with my son’. But I soon realised that he’s obsessed with numbers and doesn’t want to kick a ball. He wants you to do the times table with him.”
“A lot of the hopes and dreams we have about parenthood don’t come to fruition regardless of arthritis,” he adds. “So don’t get too hung up on it.”
Finding your support network
If you’re finding things difficult as a parent, Joel urges you not to bottle up how you’re feeling. Be aware of your support network and remember there are people who can help. “There were times where I just bottled it up or didn't want to ask for help because I was worried about looking like I was too weak,” Joel says.
“I think it's important to know when to ask for help. Be aware of your support network and don’t be afraid to put your hand up if you need it.”
If you need any advice or support on living with arthritis, remember you can also contact our helpline for free (Monday–Friday, 9am – 6pm) or ask our online community for their tips and advice.