Explaining Your Rheumatoid Arthritis to Loved Ones

We’re dedicated to sharing the perspectives of people affected by chronic inflammatory conditions like rheumatoid arthritis (RA). That’s why we created Arthritis.com, a place where people living with RA can find inspiration, lifestyle advice, tools, and disease information. Following is an article from Arthritis.com contributor Mariah Leach who is living with RA.   

Being a parent is always a demanding job, but being a parent who lives with arthritis presents some additional challenges. My rheumatoid arthritis (RA) sometimes makes it difficult to pick my kids up, get down on the floor to play, or even get dinner on the table. Based on my own experiences, here are six things to keep in mind when trying to help kids understand the impact of arthritis.

1. Make it an ongoing discussion

 For starters, I think it’s important to keep in mind that helping your kids (or anyone else, for that matter) understand the impact of arthritis likely isn’t going to be a conversation you’ll have once and be done with. It’s way too complicated for that. This isn’t a “Talk” with a capital T. I don’t sit my kids down for a family meeting with a “now we’re going to talk about arthritis” announcement.

Instead, I wait for opportunities to arise naturally. Sometimes my kids lead the discussion with their questions. Why do we have to go to the pharmacy again? Why are you wearing that knee brace? But I also bring the topic up myself. On days when I’m struggling, I’ll share how I’m feeling and why. Importantly, I try not to push the topic. I answer my kids’ questions, but I also let them change the subject as soon as they are ready. Arthritis isn’t going anywhere, so there will always be another chance to come back to this topic!

2. Keep it age-appropriate

 When trying to explain arthritis, the level of information necessary depends on the child’s age. Even young children can be very perceptive–my three-year-old notices when I can’t do certain things – but I don’t need to give him confusing terminology or explain my treatment plan in detail. For toddlers and preschoolers, keep it simple. Mommy has an owie and so I can’t pick you up right now. Mommy is too tired to ride bikes; can we read a story instead? With little ones, the most important thing is whether you’re present and whether their needs are being met.

Kids who are closer to elementary school age may start to notice the impacts of arthritis a bit more. So, with my six-year-old, I’ve started giving a little more detail. We talk about what joints are and work together to identify joints in each of our bodies. We talk in general terms about joint pain and fatigue, and how mommy takes medicine to help her feel better. I encourage him to ask questions and express his concerns, and I do my best to replace any fear or resentment with knowledge and information.

I don’t have older kids yet myself, but I know that our discussions will evolve as my kids grow and mature. My more experienced mom friends have recommended other ways to let kids see the impact of arthritis, such as bringing them along to a doctor’s appointment. My plan is to continue being open and honest and encourage questions–if there’s something I don’t know how to answer I’ll treat it as an opportunity for us to learn together.

3. Be reassuring and hopeful

 Regardless of how old my kids are, whenever we talk about arthritis I try to be as reassuring and hopeful as possible. I know that my boys often react to my own emotions, so I try to maintain optimism and let them know that arthritis is something that can be managed. I explain that while sometimes I might not feel well, my flares won’t last forever. Personally, I think the ability to recognize the reality of the disease while continuing to find ways to face forward is key to living well with arthritis–and this is a message I try to pass along to my children.

4. Be prepared

I do my best to prepare in advance for bad days. I keep an activity cupboard – stocked with coloring books, construction paper, markers, stencils, stamps, puzzles, blocks, games, etc. – so we’ll always have quiet projects to work on when I’m not feeling well. I also explain to my kids when I’m in pain or don’t have a lot of energy and ask for their suggestions on what we should do instead. Sometimes they’re thrilled to read a bunch of stories or just snuggle together on the couch.

Though I’ve been fortunate not to experience this many times myself, I know there will likely be days that my kids will be disappointed because my rheumatoid arthritis keeps me from participating in an event that’s important to them. When this inevitably occurs, I’ll still try to find a way to be part of the event even if I can’t be by their side. For example, I could have my husband take a video to watch with the kids later, ask my kids to bring back a souvenir from their adventure, or just take the time to validate their frustration and think of something concrete we could do in the future to make up for it.

5. Let them help 

Since my health does impact my kids’ lives, I think it’s really important to let them be part of the solution. For instance, if I need to lie down I’ll let my boys bring me pillows, blankets, and their favorite stuffed animals to help me feel better. Beyond sweet gestures, even my young children are capable of completing tasks that are actually helpful to the family. They can pick up their toys, clear their dishes, water plants, or even help load the dishwasher or fold laundry. When they’re older, I can ask them to help with things that give my joints trouble, like taking out the trash or carrying laundry baskets up the stairs. These tasks are not only helpful to me, but they also empower my kids to contribute and learn about responsibility.

6. Continue learning 

If your kids are still having trouble understanding the impact of your RA, it might help to read a book together. Unfortunately, I haven’t found a good one that focuses specifically on arthritis (maybe I’ll have to write one!), but there are some good general options. “What Does Super Jonny Do When Mom Gets Sick?” by Simone Colwill helps kids understand how different people are helping if a parent has to go to the hospital.

I also like to remind myself that there are some positive things my children can learn from growing up with a mom who has RA. For example, just like you shouldn’t judge a book by its cover, you should never judge someone by how they look on the outside. Instead, we should offer each other compassion and kindness. I also hope they learn that strength isn’t about being the strongest – sometimes it’s nothing more than making the decision to try again tomorrow. Which is also a useful lesson for parents to remember when it comes to helping kids understand arthritis!