My son Andy was diagnosed with psoriasis at age 4 and juvenile psoriatic arthritis at age 5. He’s now 18. Yep, we’ve been dealing with his health issues for 14 years. That doesn’t make me an expert. That just makes me a mom who can share some advice. Here’s my list of top five tips for staying as sane as possible when raising a child with a chronic disease is anything but calm.
1. Don’t put your child in a bubble.
Children fall down. Children get bumps and bruises, maybe even a few stitches and broken bones, along the way. That’s what all children do. Your child with a chronic disease is first and foremost still a child. Unless your child’s doctor says no to a certain activity, take a deep breath, put your reservations aside, and let your kid be a kid. He will never know his full potential if he doesn’t get to experience the world like other kids his age. He may just surprise you and come out on top.
Case in point. My son was a pretty scrawny kid. He’s not what you would consider strong, and with his arthritis, I was sure there was no way he could do the big climbing wall at camp. Or, so I thought. Instead, he was a spider monkey climbing to the top in record time. And to think, I almost discouraged it because I was so sure he couldn't do it. Way to prove me wrong, Andy!
2. Pay attention to your mom (or dad) intuition.
That feeling in your gut is real. No one knows your child like you. Don’t let anyone tell you otherwise. You might have a fight on your hands, but you’re fighting for your child’s health, so make some waves if you need to.
When Andy was in fourth grade, he would have bouts of severe chest pain. Some said he was faking it because he needed extra attention. I knew this was not the case. Despite all X-rays and tests coming back normal, I refused to give in and agree with doctors who said he was faking it. I knew there was something else wrong. My intuition was right. Two emergency room visits later, his rheumatologist took over and increased his arthritis medication, and the pains went away. It turned out he has arthritis in his rib cage and he was flaring. Often this area is only diagnosed after all other possible causes are ruled out.
3. You are not a helicopter, so don’t hover.
How are you feeling? You look tired. Are you ok? Let me do that for you. Do you need Tylenol? A bath will help you feel better. I’ll get the water started. How are you feeling? No, really, how are you feeling? How are…
In our house, we all love each other. We are all there to help each other. After too many outbursts of "I’M FINE," we introduced a quiet rule at our house: You only get asked once how you are feeling, and if you need help, you need to ask for it. As a result, Andy was more independent growing up. He tried to do everything himself and never used his psoriasis or arthritis as an excuse.
To protect our kids, we swoop in with our mom and dad superhero capes and become protective force fields that dodge all insensitive questions from classmates and unrealistic demands from teachers. Sooner or later, we have to retire our superhero costumes and accept the fact that we aren’t with our children 24/7 and we can’t save them from every situation. Nor should we.
During a meet and greet before kindergarten, Andy was covered nearly head to toe with psoriasis. I tried to get him to wear long sleeves and jeans to hide the plaques so that he wouldn’t have to answer embarrassing questions. He refused and only wanted to wear a T-shirt and shorts. It was one of the hottest days of summer, so you couldn’t blame him. I took a deep breath, and we went in his classroom to meet his teacher. While I was busy talking to the teacher, I heard another child ask, “What’s that on you?” Before I could even speak, my son said in a matter-of-fact tone, “Oh, it’s ok. It’s psoriasis. It’s kind of like bug bites because the spots are itchy. But you can’t catch it, so it’s ok.” This other little boy and my son became good friends that year.
And this brings us to number four.
4. Teach your child to advocate for herself.
Learning to speak up for yourself is an important skill for everyone, whether you have a chronic disease or not. Empowering your child will boost her self-esteem and educate people about the disease and what it is like living with it. And, when people are educated about a disease, they become more sympathetic and caring to the situation. Nothing is more powerful than hearing it directly from the child who is living with the disease. A first-hand account is incredibly strong and effective.
5. Don’t forget about you.
There’s no doubt that you’re working hard to keep your child’s doctor appointments, lab results, medications, and school life in check. You’ve probably felt stressed out and filled with anxiety many times during this roller coaster ride. You are no good to your children or our family if you don’t take care of your own mental health. Take time for yourself. You’ll feel better, and so will everyone around you. In other words, put your own oxygen mask on before assisting others.
What tips for staying sane have worked for you?
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