In college, I worked as a tutor for elementary school children. My job was to help with homework and keep an eye on the kids until their parents picked them up. But often, I felt like I played so many other roles — official spider squasher, snack lady, and most importantly, counselor. The kids, still buzzing from school, often had so much to tell me about their days. As long as homework was finished, I’d listen to what they had to say.
It’s been years, and I still miss my kids. I pray that they all have someone at home who listens to them, because all kids want is to be heard.
Unfortunately, kids with juvenile arthritis often feel as if they’re not being heard. After confiding about their pain levels, it’s common that they are told things such as, “Be grateful, some people have it much worse,” or “We all have aches and pains.” They may even hear, “You’re too young to be in that much pain.” These remarks can hurt, and they are a reminder of whom one can confide in and whom one can’t.
I think it’s normal and healthy to allow your child to talk about what they’re going through. Not only do they need an outlet when they are flaring, but also I think it’s wrong to pretend that it’s not happening.
For them, pain is a part of life that unfortunately, they have come to accept. Speaking about it doesn’t mean they’re seeking attention or sympathy. For your child, it’s just a part of their day, and talking about it isn’t that different from letting you know how school went. And they hope that you acknowledge it.
Someone to trust
I think some parents fear letting their child talk about pain too much. Maybe they’re afraid that their child is trying to get extra attention or that talking a lot about their struggles will cause a lack of empathy. But just talking about what they’re going through doesn’t necessarily mean it’s complaining. There are many ways to facilitate understanding in young people of all ages, and being told that “other people have it worse” isn’t one of them.
In my experience, young people with juvenile arthritis do not want pity. Like everyone else in the world, they want to be able to confide in someone they trust about what they’re going through. They want to talk about what they’re going through each day without being dismissed. Responses as simple as, “I hope your knee feels better tomorrow,” or “That sounds rough,” go a long way.
Listen to the signs
I also feel that there is danger in discouraging your child from openly sharing, or brushing them off when they do voice a concern — especially if it’s an issue that has bothered them for a long time. You may be dismissing something as no big deal when actually it is a big deal. Not only is long-term damage possible, but also you may set up your child to doubt themselves moving forward. The next time they have an issue, they may dismiss it as being overly dramatic.
They deserve a life
This is not to say that it’s OK to always talk about JA. I think your child deserves to have a life beyond their diagnosis, and it’s good to encourage them not to dwell on their condition all the time.
It’s essential to do this compassionately by letting them know that while you acknowledge what they’re going through and want to be updated, it’s good for them to also talk about other things going on in life. I can’t stress enough the importance of letting them know that you want to be updated, as sometimes, it can feel like others don’t want to hear about these issues, so a reassurance is touching.
Kids with JA are just that: kids. They have so many things going on that they want to share with you, both good and bad. They don’t need much — you don’t need to have perfect responses crafted from parenting books. You don’t need to investigate every detail and solve every problem. It’s much simpler than that — they just want to know you are listening.
Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.
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