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After having had juvenile idiopathic arthritis (JIA) for 20 years, I had a moment in my journey when I realized something new: “Your arthritis doesn’t just affect you, you know,” my sister said. This statement stopped me in my achy tracks.
For two decades, I had been operating under the assumption that JIA was my problem, my disease—that I was the only one who had to deal with the aches, pains and limitations. Yet I was one of six people in my family growing up, and when she said this to me, my perspective burst open to the reality of the impact of arthritis on everyone around me.
She was right. I was the one diagnosed with JIA when I was 6 years old, but she was a 3-year-old who inevitably also had to deal with her sister’s disease, as did my 30-year-old parents who had three young daughters at the time, and another on the way.
Nobody in our family knew anything about juvenile rheumatoid arthritis (JRA), as the disease was called most of my life. In the words of my father, “Everything I [had] heard about JRA [in 1965] was extremely negative, the future grim.”
Times have changed. Thankfully, I am not confined to the wheelchair my parents had prepared me to expect (They believed that; I did not). I live a full and productive life—after six successful joint replacement surgeries, multiple courses of ineffective and effective medications, access to excellent medical care and my personal ongoing efforts to stay strong, mobile and healthy. My family and I are now more than 50 years’ familiar with this disease, and so as I prepared this article, I thought I would ask my parents and sisters to share their perspectives with me about what it was like for them growing up with JIA, because that’s what happened: We grew up with it together.
Growing up with JIA
We lived just a few miles south of Boston, which is a city not short on rheumatologists. I was diagnosed after five weeks in the hospital, and I have been under the care of expert medical teams ever since. In the beginning, it was confusing. People were familiar with arthritis as something that happened to old people for no reason other than the unavoidable consequence of getting older or overusing their body. How could a 6-year-old have arthritis?
I was occasionally a participant in clinical trials during the first decade of my diagnosis. My sister, overhearing bits and pieces of information about these studies, developed an image of me as a guinea pig being stuck with all kinds of needles with no known benefits. She also recalls coming along to some of my doctor appointments, where the two of us would play in the pediatric waiting room, sometimes for hours. “Seeing other kids who had what you had painted a very grim picture that was hard to see as a kid.” In the back of our minds, we each wondered if I would start to look like some of the seemingly sicker girls, bloated from prednisone or already using forearm crutches. But we didn’t talk about it.
Between doctor visits and hospitalizations, I did walk with regular crutches intermittently when the flare-ups were intense. But even when I needed them, there were still times when I would leave them behind, making the decision to endure the pain rather than deal with the cumbersomeness of having them with me all the time, relying on other people to carry my stuff or, worse, have people wonder what was wrong with me.
For several years, part of my treatment was to lay face down on the bed and hang 1 lb. sandbags off my ankles. After this exercise, I couldn’t bend my legs right away or reach the bags, so someone else in my family had to remove them.
At bedtime, my mother would help me buckle plastic molded splints around my legs to reduce contracture. This was often so painful that I would wake up in the middle of the night crying out for help to get them off.
I was prescribed a series of isometric exercises to perform daily to maintain flexion and range of motion. I took 16 aspirin a day for eight years—until other non-steroidal anti-inflammatory drugs (NSAIDs) became available.
My sister made a comment in jest when asked what it was like for her to grow up with an arthritic sister: ‘My parents just spoiled her with love, attention & gifts, & ignored the rest of us.’
I spent a lot of time in my parents’ first-floor bed because my bed was upstairs and too isolated from everyone else. I missed many days of first, second and third grades, but was homeschooled by my mom, who had been an elementary school teacher. When I did go to school, I often had to stay inside during recess when the other kids ran around the playground. During gym class, I sat off to the side watching the other kids play softball, kickball or climb ropes. When I did feel well enough to participate on a team, I would be picked last. But nobody really knew why I couldn’t run the bases, or why I walked funny when I basically looked OK. Meanwhile, my sisters had ballet lessons, gymnastics competitions and played Little League baseball. I went to their games, competitions and recitals. While they participated, I observed.
When I recently asked my family what they worried about in regard to my situation, one sister said she worried that I was not having enough fun. Much of the time, I was not.
One sister made a comment in jest when asked what it was like for her to grow up with an arthritic sister: “My parents just spoiled her with love, attention and gifts, and ignored the rest of us.”
My mother outwardly worried about practical things, such as the logistics of getting to doctor appointments, reminding me to take my medicine and telling me to proceed with extra caution wherever I went so that I might be able to avoid any added pain. Inwardly, however, she worried about my future. Would I be able to get a college education? Would I be able to work? Would I find someone who would love me and be able to cope with the disease if it continued to progress and disable me? She worried that my sisters didn’t quite understand why I couldn’t do simple chores and says, “I tried not to focus on your problem openly in front of the rest of the family, even though it broke my heart to see your pain and your determination to hide it.”
I was very good at hiding my pain. When I was having trouble getting up the stairs, my mother would typically ask, “Are you hurting today?”
I would answer, “No, I’m fine,” and we would leave it at that. Clearly I wasn’t fine, and I may have even been annoyed with the question. Why ask a stupid question when a better question could be asked? My father claims that he worried about my mental state. “I was deeply concerned with her attitude and her being able to talk about it.” But nobody asked whether or not I was depressed, scared, angry, lonely or handling it well. I learned to handle it on my own and got very good at it.
I did what every other kid did when I could: I went to school; I rode my bike; I went to the beach; I made friends; I prepared to go to college; I kissed a few boys; I thought about adulthood. Although I understood the idea behind actively working to help me feel normal, which to a great extent, was exactly what I wanted, too—to feel like an able-bodied person—the reality was that I had many challenges and obstacles that nobody I knew had to deal with.
I was worried about my future. I was envious of my sisters’ having nothing wrong with them. I wanted desperately to be able to participate in all the activities they could easily participate in. It often felt as though they were going about their lives without any appreciation of my disappointments. I didn’t know who to turn to. I didn’t want them to know I was disappointed. I didn’t want them to feel bad for me, and I didn’t want them to think I felt sorry for myself. It may have been easier for all of us if we had openly acknowledged my limitations and found a healthy way to talk about them instead of pretending they were not happening.
My doctor visits were, and still are, clinical. We talk about pain, medications, bloodwork, morning stiffness, swelling, joint tenderness. We gauge the efficacy of the medications I take against the symptoms that give me the most trouble. Do we need to make adjustments? Do I need any refills? Do I have any questions about the medication?
Everyone in my immediate family pretty much knows as much about the etiology, treatment options and prognosis of RA as we could possibly know without being research scientists or clinicians ourselves. What we didn’t know was how to talk to each other about how we felt. Each member of my family has revealed a fair number of questions that were never raised and, therefore, never addressed.
We were all operating on a number of assumptions, such as me saying that I was fine when it was obvious that I was not feeling well. Some took this as denial. Others thought it was too upsetting for me to talk about. Others thought I was in a mood. But usually, fine meant that I didn’t want anyone else to feel they needed to be concerned with my problems. This extended to my doctor visits. I didn’t complain. I wanted to be a good patient. I wasn’t as sick as other kids. Thus, many opportunities were missed to gain a deeper understanding not of what JIA is, but of how to bring up the sensitive issues and how to give and receive support with grace.
Reflecting on when I had my first joint replacement surgeries at the age of 28, my younger sister said, “That was the first time I realized how serious this was.”
If my own sisters were unclear about how arthritis was affecting my life, how could I expect friends, employers and colleagues to understand the impact that arthritis has on anyone’s life? For the most part, the impression I gave to the people closest to me was that there were some days when I just didn’t feel good. The fact that I needed medication, crutches and canes, physical therapy, lots of doctor appointments and, eventually, several joint replacement surgeries, all seemed to be accepted as no big deal. My normal.
I asked my mother how she and my father handled having a sick child as a couple. What did they talk about? What concerns did they share? How did they manage four kids when one of them was so sick for the majority of their marriage?
She said the only discussions she remembers having were about insurance problems. She feels bad about this now. “Why didn’t we talk about it?” she asks, expressing regret at not having done a better job. Maybe because we live in a culture of denial and avoidance when it comes to emotions. She is certainly not alone.
I feel sad thinking that she had nobody to talk with. The doctors and nurses focused on the physical aspects of a disease that was also wreaking havoc on her family. But the clinician’s job was to keep the disease from doing too much damage, to preserve my joints and to encourage me to follow the treatment plan. It was nobody’s job to address all the living life fears and concerns that went along with the physical symptoms of a disease that may never go away. When the majority of life takes place outside the clinical setting, with nonclinical people, why didn’t anybody take a little extra time to learn how the family was managing it all?
The Up Side
On the positive side of how JIA affected our family, I can say that we are all unusually comfortable in hospitals, have a unique appreciation for what really matters (we do not sweat the small stuff) and have great respect for medical progress. After all, I am doing considerably well, thanks to pharmacological and surgical advances in the treatment of RA.
Over the course of 50 years, our individual lives have been laced with medical tragedies and complexities that we have been slightly more prepared to handle due to our experience growing up with a chronic illness. We each set a high bar when it comes to developing meaningful doctor–patient relationships, because we understand this to be crucial to effective disease management.
A Shared Responsibility
I feel strongly that healthcare teams need to share the responsibility of helping families gain a clear understanding of how a person’s disease is affecting each family member. It’s not enough to send a patient on their way to figure the rest out for themselves.
Doctors, understandably, are pressed for time, but if they cannot address the needs of the whole patient, it would be great if they would collaborate with someone on the team who could. They could also take the time to familiarize themselves with, and refer patients to, websites, apps and other resources that offer nonclinical support.
A diagnosis does not have to be isolating. Each person should not have to sit with their concerns in silence. Good questions need to be asked at different times throughout the course of the disease. What a patient needs at various stages of life changes—even if the disease is pretty much under control. If healthcare professionals are serious about improving the patient experience, then they need to look for opportunities to go beyond a response of “fine” and get to know what their patients’ lives are like a little more. They should dig a little deeper and practice some of the best human qualities available—compassion, curiosity and understanding.
Catherine I. Morlino is a patient thriving in Boston. She also serves as a patient expert on the Experts in Arthritis Advisory Committee of the U.S. Bone and Joint Initiative.
