Raising a Family with Rheumatoid Arthritis

Raising a Family with Rheumatoid Arthritis

By: Cathy Kramer

In the next few months, my oldest child will turn 20 and my youngest, 18.  It's an exciting time with young adults in the house. I feel fortunate that my diagnosis of rheumatoid arthritis (RA) came after pregnancy, infancy and toddler-hood. However, at 6 and 8 years old, my children were given a quick lesson on what it's like to see Mom develop and figure out a chronic illness.

Many parents choose to hide their chronic illness from their children for as long as possible. In my case, my daughter, who has always been very in tune with me, figured it out around the same time I did.  She sat on my lap and saw the first signs that something was wrong—“Mommy, why are your fingers so big?”  Both kids noticed the struggles that quickly took over my body, and being the caring people they are, they wanted to help me in any way possible. For me, the decision to have an open discussion about what RA is and how it could affect my body was necessary.

•  I explained in simple terms that my joints hurt, and they both needed to be careful with me, giving specific examples.
•  I let them ask as many questions as they wanted, and I answered them as honestly as I could.
• My children were old enough at my diagnosis to know the difference between how I felt before and how I was feeling at the time. I was asked if I was going to die—the worst question a mother can hear from a young child. I felt confident assuring them this was not something they should be concerned with.
•  I shared that some days would be better than others, and I didn’t know for sure what was going to happen. But I told them that I would always be the best momma I could be. That was reassurance enough for them.

      Both kids were fairly young but needed to find ways to help me, and I needed to let them do that for me.  As a homeschooling family, my children were always with me.  My son was/is my protector. I could always find him next to me at the grocery store ready to help load groceries or at the end of a playgroup ready to grab the lunch bag from me.  I realized when he was old enough to stay home alone how seriously he took his job as my protector. When I told him he could stay home while I went to my rheumatologist appointment, he said, “Are you sure? I don’t want you to go alone if you might cry.”  My daughter, on the other hand, was/is my cheerleader.  At six years old, she developed a system of tracking how I was doing each day. We printed out a calendar for the refrigerator and each morning she would check with me to see how I felt.  She would use a variety of faces to represent my condition.  It helped her to know what I might be capable of doing that day. One day, she went to the calendar and was so excited because I had an entire week of happy faces. When I started seeing a naturopath to work on eating healthier, my daughter cheered me on when I ate well and helped me from not eating inflammatory foods when I was tempted. (She still keeps a watchful eye on my nutrition and food choices.) These were big responsibilities for her to take on as a child, but looking back, I don’t think there was any other way we could have dealt with my pain, the unstable feelings, and the fear that we all had. My children saw me in pain, and they felt better knowing they were helping in some way.

Parenthood and exhaustion go hand in hand. Add in homeschooling your kids until high school, teaching a class or two in the evenings and dealing with joints that don’t want to move – you will probably find yourself with a full-blown case of exhaustion.  But, like we all do, I made it work in the following ways:  

• I planned naps into my day, especially days I worked in the evening. I was lucky that my kids always stayed close by while I slept. 
• On days that a nap wasn’t possible, I planned quiet time into our day. The kids and I would lay in bed, snuggled up watching a TV show or reading a book together.   
• I learned to ask for help from others.  This was hard at first, but with a little practice, it got easier. I asked my husband for more help around the house or to pick up groceries on his way home.  My sister even cleaned out my refrigerator when she was visiting from out of town. 

I have been very fortunate that my family has always been very close. My husband has always made the kids and me a priority. I remember many evenings when he would play with the kids so that I could sneak away to soak in the tub. On the weekends, he would offer to take the kids out so I could rest. My husband and kids have honored my need for alone time when I am experiencing a flare. They are there for me, but also respect that sometimes I need time to cry it out. 

In addition to helping my family find ways to help me, I’ve also learned how to care for myself in the following ways: 

• I keep my schedule simple. 
• I plan ahead for home and school so if a flare occurs, it doesn’t feel like the end of the world..
• If I am flaring, I drop everything I can and focus on myself.
• I remind myself that rheumatoid arthritis is like a thunderstorm.  When it is active, it is strong and scary, but the calm always comes.
• I incorporate things I can look forward to into my day such as a chocolate bar, a quiet walk or a movie with the family.
• I found a rheumatologist that I feel compatible with and don’t hesitate to tell her if I feel I need more attention. If I could go back and redo one thing from my RA journey, it would be to find a rheumatologist I was more compatible with from the beginning. Rheumatoid arthritis is not a disease to take lightly. The first years are lonely. You don’t understand the pain or the feelings of inadequacy that can come with the physical limitations. Until I found a rheumatologist I clicked with, I wasn’t a strong advocate for myself. I needed a support system outside of my family to discuss the tough job of being a mom with an autoimmune disease. Despite having a wonderful family, I often found myself alone in the shower hyperventilating. I wish I had shared the need to either see a therapist who specialized in chronic illness to discuss these feelings or asked if my rheumy knew of other patients I could talk to. Several years after my diagnosis, my naturopath set up a meeting between a newly diagnosed patient and myself. I remember feeling such relief in knowing I wasn’t crazy for having the feelings I had. I also would have asked for physical therapy early on. Once I hooked up with my current rheumatologist, she recommended it immediately.
  
  

It took a long time, but I now have more good days than bad.  My daughter mentioned one day that she sometimes forgets that I have RA. That’s an awesome feeling.  My pain and limitations are no longer the focus of our family life. While my daughter says she sometimes forgets, I believe that compassion for others became a part of both of my children’s personalities as they were growing up. While life would have been easier without a mom with RA, I feel that it has helped my children to look beyond what they see in a person to what else might be going on. Plus, they are both proud of me. They have mentioned many times how amazing I am. They have grown up watching their mother deal with a chronic illness. They saw that despite the pain and fear I often experienced, I lived up to the promise I made to them that I would always be the best momma I could be.  I lived up to that promise plus so much more. I made my kids proud of me as a person.  

Balancing RA and a family can be challenging, but you can do it.  You can make your children and yourself proud. Sometimes it doesn’t seem possible at the beginning, but trust in yourself, and you will get there. We each have a story to share that is uniquely our own while sharing the same disease.  Listen to your family when they say they want to help.  Choose a rheumatologist who listens to your needs.  Be an advocate for yourself at your appointments.  You deserve it!

This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.

Check out the Joint Decisions Facebook page to connect with others in the online RA community, and visit JointDecisions.com for RA resources and tools.