Elizabeth and Beth are two of our Vectra® Ambassadors who not only care for their children while managing their own RA; they also manage their children’s JIA, juvenile idiopathic arthritis. As part of our Parenting with RA series, we sat down with them to get their perspectives on caring for children with JIA while managing their own RA at the same time.
When did you discover you had RA and when did you discover your daughter had JIA?
Elizabeth: Although my RA was suspected for a few years, I wasn’t officially diagnosed until 2014. It wasn’t long after that I started to see signs of arthritis in my daughter: joint swelling, stiffness when she woke up, needing a walker…she was nine years old at the time! It wasn’t as obvious as it might sound, though. My daughter has experienced other health issues, including foot surgery, and has been in physical therapy for many years. It was hard to know if the swelling and difficulty walking were related to her other issues or symptoms of arthritis. We went to a number of specialists, including my rheumatologist, before being referred to a pediatric rheumatologist, who diagnosed her in 2016. The first day she saw him, she had to use a walker to get to his office. As a parent, it was incredibly hard to see that.
Beth: My daughter also was diagnosed in 2016 and, in retrospect, had been showing signs since she was a toddler. I remember seeing her at three years old, crying and holding her knees. I started experiencing symptoms during my last pregnancy, in 2012. My thyroid was not working, a clotting disorder was suspected, and I was sick all the time with strep throat and in a lot of pain. That’s when they did blood work and I was diagnosed with Lupus and RA. It was a lot to take in, especially as the mother of three young children, and I was really trying to wrap my mind around my own condition.
About a year later, I began to see it in my daughter. I discussed my daughter’s symptoms with our pediatrician and shared that I had RA. Our pediatrician took my concerns seriously and was really good about listening to what I had to say, documenting everything that my daughter complained about and staying alert to what was going on with her. What my daughter vocalized about how she was feeling mirrored the way my body felt. Without my own RA, I may have attributed her complaints to growing pains, but as an RA patient, I knew. Now my youngest is six years old, and he’s starting to show signs of RA himself. We’re keeping an eye on it with a rheumatologist.
What’s challenging about mothering a JIA patient while you are managing your own RA?
Beth: I see two sides. The positive aspect of mothering a JIA patient while managing my own RA is that I believe I am more understanding and aware than I would be without having gone through it myself. I pay close attention and take her complaints seriously. At the same time, I’m also tough on her. I know that I have to fight through it, and I push her to do the same. I know that she’s still a little girl, but I also know that her whole life is ahead of her, and I don’t want her to use her JIA as an excuse not to pursue what she wants to do. It’s a fine line, and every day I try to balance being sensitive to what she is experiencing while at the same time pushing her to stay strong.
Elizabeth: For me, the hardest part is seeing what she’s not able to do. She wanted so badly to play soccer, but it wasn’t a realistic possibility for her. Because of that, she began swimming, which she adores. It’s often about finding what is possible and embracing those things. My daughter and I face a lot of our challenges together. I made the decision to home school her, which has made it so much easier on her because we can minimize the handwriting requirements and work around her fatigue. She is more comfortable at home. On the other hand, I also experience fatigue, and sometimes it’s hard to have her at home with my schedule of working early in the morning, then moving straight to homeschooling. I don’t have time to rest, and it can snowball on tough days. I work hard to take care of myself by getting to bed early and giving myself permission to say no or take time for myself to do yoga, walk in the park or stretch my joints.
As a parent, knowing how medications affect me and the side effects I experience made it that much harder to agree to medication for my daughter, but at the same time, I was so acutely aware that she needed it. When my daughter needed methotrexate, she couldn’t tolerate pills, so I had to give her shots. It was heart-wrenching. I feel so strongly about advocating for her needs. The treatments and tests for children are different than for adult RA patients, and I make a point to educate myself on the differences through JIA conferences and online research. And like Beth, I agree that as parents with RA, we better understand what our kids are going through and that makes us better advocates for them.
How has Vectra helped you manage your RA so that you can provide the best care for your daughter?
Elizabeth: Vectra is invaluable for putting what my body is feeling into perspective for the doctor. Seeing the score and knowing when a medication is or isn’t working helps me advocate for myself. Around the time I was being diagnosed, a lot of doctors didn’t believe what I was telling them I was experiencing—or they did believe me, but attributed it to depression, or another reason. Not all lab results reflect how my body feels, so having that number is a game-changer. Vectra is always spot on. Being able to advocate for myself helps me to advocate for my daughter.
Beth: I agree. Vectra validated for my doctor what I was feeling in my body. It was proof and gave me confidence. Getting a Vectra Score twice each year helps me stay focused on my treatment. When I received my last Vectra, I felt I had been doing better and that my treatment was working, and my Vectra Score reflected that. I still experience hard days, but it’s encouraging to remind myself that my score showed that I am on the right track with my medication and keeps me going so that I can stay strong for my kids. I am so grateful to my rheumatologist for introducing me to Vectra.
Being a mom is a journey in itself. With RA, you just take it day by day. My faith is a big part of how I get through it. We are all on our own journey, even our kids. We have good days and bad days. We take little steps and work to appreciate the good things and all the blessings we have.