Rheumatoid arthritis (RA) is not selective in the challenges it presents in your everyday life. When you have RA, your whole life has RA. This includes having a family. Many people who live with this disease are worried about its impact on their ability to be parents. Will RA make you a bad parent? Not at all In May, we started our series on RA, pregnancy and parenting with an interactive post on pregnancy and RA. Today, I’ll focus on information to help you with parenting.
The new normal
One of the first things you learn when you are diagnosed with RA is that doing things the way you used to do them is a recipe for frustration and possibly a flare. RA means there’s a new normal, one where you accommodate your fatigue and pain and find different ways to attain your goals. That’s easier said than done. For many, this is a very emotional challenge, one that can be a reminder that you are no longer "normal."
And this is when I’m about to tell you something revolutionary: There is no such thing as normal. We all do things slightly different, whether we have RA or not. Some put on their socks before their pants, some after their pants. Some people eat their dinner in categories vegetables first, then potatoes, then protein others alternate and combine. The same goes for parenting. The important thing is not how you get to your goal, but that you get there.
With parenting, your goal is to raise kind, healthy and loving children. In fact, growing up with a parent who lives with a chronic illness may actually be good for a child. It teaches compassion for others and, if your child needs to help out a bit more, encourages competence. Those are good traits to develop.
Tools for parenting with RA
Every parent needs a toolbox of parenting tricks. Whether it’s learning that a side-to-side rocking motion is sure to put a fussy baby to sleep, how to deal with a four-year-old’s princess obsession or talking to your teen about drugs, it is all a learning process, and sometimes a frustrating one. As you learn to parent with RA, remember that you’re not alone in your frustration. Other parents know exactly how you’re feeling–perhaps for different reasons, but the feeling is universal.
One of the best ways to learn new tricks for your parenting toolbox is to talk to other parents. Take to social media, look for blogs, online communities (such as Moms with RA) and Facebook groups focusing on RA and parenting. Then start connecting.
If you’re looking for practical tools to help you with the physical aspect of taking care of a baby or toddler, exploring what other parents with disabilities do can be very helpful. One great resource is Parents with Disabilities Online. The site includes a section on adaptive parenting aids and products that can help you with the more physically intensive tasks of having a small child. For instance, the Baby Lifter helps you get your child off the floor, while the Magnetic Tot Lok is a great alternative if you have dexterity issues that make it difficult to use regular child safety cabinet locks. The Babee Tenda crib allows you to reach in from the side of the crib, rather than bending over the rail and lifting. It also converts to a toddler and youth bed.
You’ll also need tools to help your child understand RA and chronic pain. Trying to soldier through and pretend everything is fine won’t work. Children are observant little creatures with vivid imaginations. In absence of facts, they are likely to create their own explanations, which are often wrong and can even be scary for them.
A child’s biggest fear is the death of a parent, and unless you tell them the facts–in an age-appropriate manner, of course–they may come to believe that you are dying. Keep the lines of communication open and answer questions honestly, without overwhelming your child with too much information. A new book, Why Does Mommy Hurt?, is a terrific tool to start conversations about chronic pain with children from age two to nine. For older children and teens, your conversations can become more sophisticated, including information and resources from The Arthritis Foundation, as well as HealthCentral and other sites.
Asking your child for help is not a parental failure, but rather a parental win. Being a parent is about working toward your own obsolescence. Your goal is to teach your child to manage in the world and take care of himself. This involves learning everything from doing household chores and cooking to being generous toward other people. Growing up in a family where everyone helps out and chores are distributed according to ability will help your child grow into a beautiful and capable adult.
Being a parent is about much more than the physical tasks involved in taking care of a child. The really important parts of being a parent are unconditional love, patience, creativity, willingness to put your child’s needs before your own, and helping your child find his way to become a unique individual. And none of those have anything to do with your physical ability.
Relax. Breathe. Enjoy being a parent.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.