Almost Fearless

Pushing Children: Lessons From Chronic Pain

“Mom,” my youngest daughter, Isabel, whines, her copper hair sweeping across her freckled cheek. “My knee is killing me. It’s seriously the worst pain I’ve ever felt in my life. Can we please be done?”

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I take a deep breath and assess the situation. We are less than halfway into our hike through the cliffs overlooking Torrey Pines State Beach in San Diego. The breeze is crisp, the view pristine. My two teenaged children are practically skipping along the trail. After months of constant rain and unusually cold temperatures, this hike serves as a cathartic release for them. My oldest daughter motions for us to hurry. She wants to climb to the top of a sandstone structure, where a website has promised vistas of ocean to the west and mountains to the east.

I look down at Isabel’s left knee. I can see through her leggings that it is rather swollen. I ask her to number her pain. She lands on a four, far from the worst pain she has ever felt, but nothing to scoff at either. I offer her a sympathetic smile and speak matter-of-factly. “Let’s go until you feel like you’re at a six and then go just a little bit further than that.” Her distressed expression warns me that she might cry. My resolve begins to falter and I consider taking her to the nearest bench to sit out the hike with me. Blinking away tears, though, nostrils slightly flaring, she suddenly takes several shallow, staccato breaths and then pushes past me to catch up with her siblings.

This tug-of-war has become our new normal since the last time we’d taken this same hike in late summer. She’d slipped on a wooden railroad tie that day, her left knee taking the brunt of the fall and resulting in unrelenting swelling.

We followed the usual protocol for an injured knee—RICE: rest, ice, compression, and elevation—at home for a few weeks, but ended up in the Urgent Care on a particularly painful day, one punctuated by a knee nearly twice its normal size. The Urgent Care doctor sent us to a rheumatolotgist, who confirmed a fear I’d begun to harbor: my daughter, like me, has Rheumatoid Arthritis (RA), though the more insidious juvenile version, typically referred to interchangeably as either Juvenile Idiopathic Arthritis (JIA) or Juvenile Rheumatoid Arthritis (JRA). She was taking after me in more ways than just the fullness of her lips and her bizarre love of organizing.

According to the Rheumatoid Arthritis Support Network, JIA “is caused by the body’s immune system attacking its own healthy tissue.” Affecting around 300,000 children in the U.S., it is typically characterized by persistent joint pain (lasting longer than six weeks), swollen, red, or warm joints, high fever, rashes and stiffness. The educational and advocacy website, Kids Get Arthritis Too, explains that children with JIA may also experience “muscle and soft tissue tightening, bone erosion, joint misalignment and changes in growth patterns.”

It can be impossible to identify how JIA is stimulated in a particular child’s body, though genetics are certainly a consideration. In my daughter’s case, the chances are strong that her fall triggered a genetic “immune malfunction” that garnered her an early introduction to this particular auto-immune disease.

While I was diagnosed with RA at 44, after several years of unexplained fatigue, swelling and joint pain, my daughter’s onset came at an age when no child should even have to know what arthritis means. At only 12, she also has many more years ahead of her than me to fight through her disease and develop potential complications.

As the rheumatologist handed me a book about my daughter’s diagnosis alongside a prescription for strong anti-inflammatories, a conservative first approach, she told us that it is vitally important that children with JIA lead as normal of lives as possible. “Make sure she plays, stays active, and enjoys herself. Over time, she will get to know when she needs to rest and be careful. It’s all about balance.”

We moved from Chicago to Southern California shortly after my diagnosis in hopes that the warm, arid climate might reduce my pain, which was exacerbated by the frigid winters and humid summers of the midwest. I was regularly using a cane to walk back then and hikes seemed out of the question.

When an avid hiker told us of several flat, gentle local trails and suggested I try trading in my cane for trekking poles, resuming our favorite family pastime became an option we could consider again. We started as slowly and simply as any hike can be. We’d grab my poles and walk a quarter-mile stretch of a beachfront path or hike 10 minutes into a forested area. Throughout that year, one in which I often resembled a toddler learning to walk, my children were my greatest cheerleaders. They pushed me to do things I did not believe myself capable of doing. They brought me home to hiking again and, with that, they granted me a sense of resilience and victory.

There are two things I now know to be true for me about the intersection of hiking and RA: First, the promise of a lovely view on a clear day is usually enough to motivate me to push through a flare and hit the trails. And second, that which I have gained from hiking far outweighs the challenges my RA presents to the activity.

These are gifts I want for my youngest as she learns to live with her JIA. Knowing all too well how that a simple hike can offer her so much, I am hesitant to cut my daughter the slack she likely wishes I would offer.

A lot more than just sightseeing happens when we are out there on a trail together. The physical benefits are immense. Hiking is keeping our hearts in check. Since JIA is an inflammatory disease, it can negatively affect the heart, making aerobic exercise essential for our long-term health. Weight-bearing activities, often a challenge for anyone with arthritis, serve to lubricate our joints. As many children with JIA are deficient in vitamin D, the sunshine offers a hearty dose of it—vital for staving off a flare. Hikes—even slow hikes—by virtue of the variegated terrain, help to improve our muscle tone and balance, two daily challenges for those living with JIA.

Perhaps most important, though, the combination of movement and the glorious environment hikers enjoy help to combat our constant battle with fatigue and depression, devastatingly common components of RA and JIA.

Even on days when both my daughter and I require the assistance of our trusty trekking poles, which is more common than not, we emerge from our hikes feeling more hopeful about our capabilities. She may have complained every step of the way. She may even have cried at some point. But she has persevered, a gift from the trail.

“Mom,” Isabel whines at me again as we reach the furthermost overlook, one that shocks us with visibility from Mexico to Oceanside. “My pain is at a six now. I can’t go on. Can we please go home? I’m going to collapse.”

I nod and tell her we can head back. A wry, knowing smile flashes across her face. “Hey! This is the end of the path. We have to head back now anyway. You tricked me.” She grabs one of my poles and starts the long hike back to the trailhead, a spring in her step I haven’t seen in far too long. The hike has done its job: my baby gets to clock another win.

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Paula M Fitzgibbons

Paula M. Fitzgibbons is a former Lutheran pastor, who is now an educator and writer. She has been featured at such sites as Scary Mommy and The Establishment. You can read more about her many passions, including adoption reform, parenting, education, and social justice at Mommy Means It!

4 comments

  • This story is so inspiring. My daughter has JIA and she loves nature and walking trails. Someday I hope we can travel to a place with beautiful views, so she can’t get the thrill of a hike like yours. Thank you for sharing. Question..Did moving away from the midwest help your pain??

    • Hi Linda. Thank you for readings. Moving from the Midwest helped tremendously. I highly recommend it if possible, which I know is not the case for everyone.

      It has not been a panacea, of course, but it has made a huge difference. It’s been rough financially, but worth it.

  • Chronic pain can ruin a person’s life if not treated. Using the conventional methods like medications by natural methods such as acupuncture and chiropractic therapy can make it done. If she would have consulted a chiropractor or massager then she could not have suffered these years.

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