I’ve heard it said that when you suffer from chronic pain, everything takes twice the effort. I know I feel that way, especially during flares, when it feels like I’m literally dragging my body.
Sometimes people notice when I’m dragging because my body language says it clearly. But sometimes I’m surprised when people say I look great or seem to be doing well during those times. Being told how great you look while you’re struggling to get through the day brings home the invisible nature of juvenile arthritis.
It’s difficult for anyone to cope with pain, let alone children and teenagers. But the invisible nature of juvenile arthritis can place an added burden on kids’ shoulders: People tend to forget about their JA or underestimate what an effect it has on them.
People see kids living their lives as normally as possible. But they don’t know the effort it takes to push through the pain or the nightly crash and burn. So, they may not appreciate the effort your child is putting into either just making it through the day or going out of their way for someone.
Learning to cope day to day
This isn’t to say you need to applaud or praise every little accomplishment. Kids with JA need to learn to cope as well as they can day to day, regardless of getting rewards. But now and again, let them know you see how much effort they put into their schoolwork, friendships, or whatever else, and appreciate how much they are trying. This is especially important during flare-ups when everything feels so much more painful and draining.
A couple examples:
“It was nice that you still went to your friend’s birthday party, even though you weren’t feeling great. I’m sure Tyler really appreciated it.”
“I know school has been really intense lately, but I’ve noticed how hard you’ve been working to keep up.”
Even the smallest acknowledgment can help inspire your child to keep trying their best. There were so many times I felt discouraged and invisible, even as a child. I remember trying so hard to participate in activities with other kids only to be left out anyway. I remember teachers piling assignment after assignment on, even though I already was at a breaking point. It’s painful to remember all the times I tried my best, yet it wasn’t good enough for others.
A little encouragement can go a long way
Parents, your child needs someone to believe in them. Knowing that at least one person sees what they’re going through is priceless.
Not everyone in their lives will be understanding, from classmates to co-workers. God willing, they’ll have family and a few good friends who are compassionate and appreciate their effort. But knowing they can count on you to “get it” can help give them the confidence they need to keep going.
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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