“It can be an incredibly bumpy road, but if you’re there to support each other, you can turn it into a rollercoaster.”30 August 2019
Lots of people aren’t aware that children can get arthritis, and we know that for many families their child’s diagnosis has come as a real shock. We spoke to mum, Sarah, about how her family has adapted to meet the needs of their son and daughter, James and Abigail, who were both diagnosed with the condition.
We didn’t really know much about it at all
Our youngest child, James started with issues in knees when he was about two and a half and was later diagnosed with oligoarthritis.
We were completely taken aback when we received the news, I had been diagnosed with arthritis after giving birth to Abigail, but I’d never heard of a child with the condition before.
James was given joint injections when he was five and actually went into remission, but a few years later our daughter Abigail who was ten at the time and had just done her SATs, started to complain of swelling in her thumb.
We thought she was experiencing pain from all the writing she’d been doing at school, but when we took her to the doctors, she was quite quickly diagnosed by our consultant with polyarticular juvenile idiopathic arthritis (JIA) and went straight onto prednisolone and methotrexate.
It’s not been easy, but support is out there
Abigail is 16 now and it’s been a difficult few years for her. Her condition has caused her to become very unwell at times, she’s had septic infections in her joints, and at one point this led to encephalitis in her brain where we nearly lost her. She’s lots of quite severe flare ups and so far, seven sets of joint injections.
When Abigail was about 12, we were told about the Versus Arthritis residential weekends and we signed up for one. She was very nervous getting on the bus with lots of people she hadn’t met before, but when she came home, she was like a different child.
She said she felt normal, she didn’t have to hide the pain anymore and didn’t have to feel embarrassed if she couldn’t to some things.
She’s made some truly amazing friends from that weekend, they have a WhatsApp group and although they live all over the country, they keep in touch and if one has a hospital appointment, they’ll all text to share their advice and support. Versus arthritis has been a godsend for us.
Don’t be afraid to ask questions
My biggest piece of advice for families going through a similar thing, is to make sure that if you have any questions about the condition, medication or your child’s needs, ask your consultant.
I was afraid at first, I felt like I couldn’t keep asking things and would annoy doctors by doing so, but now I know this is the best thing to do. There’s no point taking the risk with things like infection and medication.
Ask about things like side effects and what could happen in the future because it’s important you have the confidence to make the best decisions you can with your child.
It’s all about adapting and finding what works for you
Despite the impact of her condition, Abigail is extremely upbeat and has always makes the best out of every situation. There are days she’s very upset and in a lot of pain, but she still goes to school and enjoys taking part in as much as she can.
As a family, we try to find things to help her. Even if it’s just silly small things, we’ll think about what will work best for her.
We’ve been doing up her room for her birthday and had seen an amazing loft bed, which would look great, but we’ve had to think about whether it will be possible for her to get up on days she’s flaring and whether we could put a futon underneath if she’s having a bad day.
We always try to be as positive as we can, but we’re also honest with Abigail. We help her to understand the different options available, as it’s her body and her future and we want her to make decisions that are right for her.
It can be hard trying to explain to others
We’ve struggled with family members and friends that didn’t want to accept the condition in somebody so young. I think it partly comes from a lack of understanding, but people say things like ‘don’t worry, she’ll grow out of it’ and this can be very upsetting when you’re aware that it might not happen.
I can understand why it might be hard to get your head around and this is why it’s important to be honest and realistic with your family if you can. Try to help them to understand.
Things can fluctuate a lot, especially with the medication. Sometimes the injections work and sometimes they don’t, this has been Abigail’s experience so far and it can be very demoralizing when they don’t, but the next time they might. Keep trying and make decisions that are right for you.
Get the support you need
If you or your child has arthritis, we’re here to offer support and advice. You can reach our Young People and Families Service by emailing firstname.lastname@example.org.
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