When I was a teenager, I wanted nothing to do with doctors, hospitals and physical therapists. I was done with blood tests, trying medications that weren't working and soaking my hands in paraffin wax until it accumulated and became a gross glutinous glove that made my skin smell disgusting.
Rheumatoid arthritis had been a part of my life for as long as I could remember and all I wanted was to be normal, to fit in, and do what everybody else my age was doing. My parents had the unenviable task of helping me have as normal an adolescence as possible and teaching me what I needed to know as an independent adult while making sure that my JRA (Juvenile Rheumatoid, or Idiopathic, Arthritis) - did not run amok and threaten my ability to be that independent adult.
JRA currently affects almost 300,000 children in the U.S.. This means there are 300,000 parents or sets of parents who have an extra task in raising their children as they become teenagers, a time that already comes with plenty of challenges. How do you help your child become independent when their chronic illness may prolong their dependence on you?
Empowering Your Teen to Make Medical Decisions
Until recently, you have been managing the medical side of things, speaking with doctors, making decisions regarding medications and surgery and balancing your child's physical difficulties with the normal parts of growing up, like chores and homework. As your child moves through adolescence, she'll have to learn how to run her life and responsibly manage her disease. The sooner you start involving your child in medical decisions, the better, so encourage him to participate in discussions with the rheumatologist, gradually taking a back seat as he becomes more confident in the situation (for tips on learning to be a good self-advocate, click here). Researching and discussing treatment options will teach your child to weigh the risks and benefits and this will help them in making informed decisions later in life. M.E.A. McNeil's The First Year with Rheumatoid Arthritis is a terrific resource when teaching your children how to manage their disease (for more about this book and an interview with the author, click here).
Is It Hormones or JRA?
Hormones have a way of wreaking havoc with teen's mood and dealing with teenagers can give you emotional whiplash -- they love you one moment, have no use for you the next and, at some point, there will be door slamming and Olympic-level sulking. With JRA, pain and fatigue can make your teen irritable, too. Give your teen space to have a wallow -- I spent much of my adolescence writing angst-filled poetry -- but keep the lines of communication open so she knows she can come to you with her problems. A good parent's guide to surviving your child's teenage years is Get Out Of My Life, but First Can You Drive Me and Cheryl to the Mall: a Parents Guide to the New Teenager by Anthony E. Wolf.
I have never met a teenager who didn't have a warped body image. When you add JRA and the possibility of deformities, you'll have your work cut out for you. I remember my parents being very body positive, being careful to not judge other people on physical looks, taking us to museums where paintings showed us how the idea of beauty changes with time and we had a lot of discussions about the messages of beauty and perfection sent by media and advertising. Unfortunately, no matter what you do, your child will struggle with body image. All you can do is be positive, giving them the kind of solid foundation that will help them see that beauty isn't just about perfect hair, weight or long and slender fingers.