A Beginners Guide to RA: Being a Chronically Ill Parent
Raising children is a challenge at the best of times and adding a chronic disease to the mix ups the ante on the emotional and mental resources required.
Rheumatoid arthritis often hits during the childbearing years, but does not appear to interfere with fertility. If you want to try to have a baby, make sure you speak to your rheumatologist regarding possible changes in medications -- e.g., methotrexate causes severe birth defects, so it's important to be off it if you're trying to conceive. Most women go into remission once they're pregnant, which typically lasts until 4 to 6 weeks after birth. If you're breast-feeding, it's important to speak to your rheumatologist about medication options that are safe for your baby.
Taking care of an infant or toddler when you have rheumatoid arthritis can be a physical challenge -- there's an awful lot of lifting and moving involved and it can put an extra strain on your joints. There are several resources for parents with disabilities that include various forms of adaptive equipment designed to make it easier for parents, such as a mother in a wheelchair, to provide childcare. Such adaptive equipment might also be helpful for mothers with rheumatoid arthritis. The site Parents with Disabilities, a website started by a mother with cerebral palsy, includes a list of equipment, such as a Baby Lifter (to help lift your baby off the floor), accessible cribs where you don't have to reach over a standard high rail and Tot-Loks, which are easier to operate for people who have dexterity problems than standard child safety locks.
As your children grow, it's common to worry about not being able to help them as much as other parents and depending on your physical limitations, your children may have to learn to dress themselves, make sandwiches, etc., sooner than other children. When you have a chronic disease, it's easy to look at what you can't do and to focus on your lack of perfection, but what you physically do for your children is less important than sharing the experience -- working together helps bring home the fact that a family is a team. Being more involved in the practical events of family life can also teach children about responsibility and help them grow into capable and self-reliant people, something that can only be an advantage in this world.
Both you and your children may worry about the disease -- not just whether the kids will develop RA, as well, but what it means when mommy or daddy are sick and hurting. Although there is a slightly greater risk for developing RA if a close family member or parent has the disease, there are a number of separate genetic factors involved, as well as environmental ones, so the risk is generally considered small. You can explain to your children that the chance of them getting the disease is very small and while you're at it, reassure them that RA won't kill you. Children have very active imaginations and if you don't give them the right information, they will fill in the gaps and may start to worry that your illness is contagious or fatal. This is especially important should you have to be away for a while for surgery or other treatment -- changes to daily routine can be hard for little ones, but normalizing the situation as much as possible and making sure they understand what's going on (naturally, at an age-appropriate level) can go a long way towards helping them not to be frightened. Always be ready and willing to talk to your children or answer their questions. If things get rough, talk to your pediatrician about resources that can help you help your kids adapt.
At the end of the day, being a good parent isn't about running down a hill or taking the stairs two at a time. Being a good parent is about unconditional love, patience, paying attention, talking to your children and teaching them how to become a kind, responsible human being. Becoming a role model who shows your kids that you can live with bad things and love and laugh anyway is a far better lesson than whether you can get the lid off the pickle jar. To your child, how your family works is normal and you are mommy or daddy, period. If a child has to crawl up on your lap themselves to get a hug instead of being lifted up, what's important about that moment is the hug, not how you got there.
Finding other people who share your experience can be a life- and sanity-saver in any situation and mothers seem to be better than most at flocking together for mutual support. One great website is Moms With RA, which contains all sorts of information on pregnancy, breast-feeding, insurance, meds, self-advocacy, resources and forums where members can discuss issues and offer direct support to each other.
Lastly, remember to take care of yourself. Parenting is a hard job that requires all the energy and wits you can muster and whether you have RA or not, it's important to eat right and get as much rest as you can manage to find (not an easy task with kids around). Being as healthy as possible helps you get perspective about what's important and what isn't and perspective is crucial to being the parent you want to be.
Background information for this post provided by Dawn Macaulay, Ph.D. and Stephanie Pearl-McPhee, I.B.C.L.C.
You can read more of Lene's writing on The Seated View.