I’ve always believed that having a robust and well-rooted foundation at home can help a child face nearly any adversity in life—a foundation consisting of well-defined values and a loving, supportive family. We all try our best as parents to give our kids the strongest start in life. But nothing prepares you for having a child with a chronic illness.
A child’s illness can challenge our expectations and shake our sense of security. It can feel like all of the stability we’ve worked to establish is collapsing right under us. Like a spotlight shining in the dark, circumstances like these expose personal insecurities and weaknesses. But I’ve also realized that this spotlight provides us the opportunity to discover and manifest our previously untapped strengths. This is a piece of my family’s story with ankylosing spondylitis (AS).
My son, Miguel, was diagnosed with AS in 2017 at age 15. Years before his formal diagnosis, he struggled with pain, but his symptoms were always dismissed as growing pains. When he was finally diagnosed, I was shocked. I questioned the diagnosis. I was confident that his rheumatologist had misdiagnosed Miguel. I thought to myself, “How could this be if there is no history of AS in our family?” I had many symptoms that were similar to my son’s: heel pain (plantar fasciitis), lower back pain, and feeling stiff after long rest periods, especially in the early morning. But doctors always diagnosed me with sciatic nerve pain and stress-related symptoms.
I refused to provide my son with the prescribed medications: methotrexate and Enbrel. In my opinion, it was unimaginable for a 14-year-old to be taking such powerful drugs. I did not understand how my son could be diagnosed with a systemic, chronic illness like arthritis—an “old person’s” disease. I was overwhelmed thinking about how this illness would impact his quality of life. I remember canceling and rescheduling appointments with his rheumatologist, giving myself time to research and find a more plausible reason for my son’s pain. I was sure I could present a more appropriate diagnosis to his rheumatologist.
Despite my denial and quest to discover a more sensible diagnosis, I also experienced self-doubt as a mother. “Did I eat healthily enough when I was pregnant? Could I have taken medications while pregnant that might have harmed my son? Was I overworking and under a lot of stress? At birth, could he have suffered some trauma whose effects are now emerging?” The “what-if” questions were never-ending.
Yet after seeing my son suffer from pain (and not be able to enjoy life), I eventually gave in and scheduled an appointment with his rheumatologist. Still not convinced of the diagnosis, I emailed his rheumatologist asking for a private visit with just me and my husband. I wanted to discuss the progression of the disease, long-term treatment options, and the long-term prognosis for Miguel. I requested to have this information withheld from my son. If his diagnosis was correct, I was afraid that this knowledge would significantly impact him. I thought I was protecting Miguel. He was a sophomore in high school, and I wanted him to enjoy these years.
But then reality struck me, and I questioned, “What am I doing? He’s 14 years old. I can’t keep this information from him. He is a smart teenager and needs to take part in the decision-making for his medical care. He needs to be informed, educated, and learn how to advocate for himself.”
Most importantly, I needed Miguel to know he could trust me and allow me to be part of this unknown journey.
I also realized that my “assumptive world” was shattered. (The assumptive world is a term used in psychology to describe the collection of beliefs and assumptions that we use to build our understanding of the world, and especially the future.) As a parent, I had basic assumptions about the sequence of milestones for my children—milestones like participating in high school sports, attending prom, and taking part in academic and social engagements. These activities were complicated by an unpredictable chronic illness, treatment side effects, and flare-ups. And what about college? I realized that a chronic illness like AS could make my son’s childhood, adolescence, and life in general anything but normal.
I have been a hospice social worker for 30 years and understand grief’s psychological impact on the human spirit, no matter what type of loss. Living with a chronic illness presents uncertainty, loss, and suffering in a person’s life. It can be a traumatic experience for a child or teenager and put the brain into a constant fight or flight state. Frequently, this leads to feelings of vulnerability. The teen years are an especially critical time of development. Teens tend to be more self- conscious, depend on peer acceptance, and challenge authority. Being diagnosed with a chronic illness such as juvenile spondyloarthritis (JSpA) in adolescence is incredibly challenging.
Once my son’s symptoms were better managed, I began searching for answers to my own symptoms. Approximately one year after my son’s AS diagnosis, I was diagnosed with non-radiographic axial spondyloarthritis (nr-axSpA) and Humira was prescribed. Finally, my medical history made sense.
As a mother with a child who has AS and as a mother living with nr-axSpA, I often feel I am fighting two battles: my son’s and my own. I believe I am responsible for setting an example of how to fight this disease. Stress is the main culprit that exacerbates my symptoms, and I am on an endless journey of learning how to adapt to some of the limitations I face due to relentless fatigue. I am learning to let myself rest. I am still learning to accept that working full-time will probably no longer be an option.
Despite the challenges my son and I have weathered, we are truly blessed and grateful for his early diagnosis and treatment. This reduced the risk of irreversible damage in his joints and slowed the disease’s progression. My son’s early diagnosis also led to an explanation of my many years of pain, and to correct treatment. Experiencing similar journeys has helped us understand each other better and be more sensitive to one another’s needs.
This journey has led me to reflect on three key points.
First, I believe people tend to want to help by saying, “I know what you’re going through. I understand.” I am also guilty of making remarks like these. The message is subtle and not intended to be hurtful. I can recall talking with family and friends about my son’s diagnosis. The response was often, “Oh! I understand. I know what it’s like to have a chronic illness. I also suffer from a chronic illness.” On the other hand, others would say, “Oh, he’s just a kid. He can handle it.” These comments infuriated me. Why? Because every individual’s journey is personal and unique. Pain is subjective. These comments can be seen as dismissive and invalidate the individual’s experiences. Life experiences (whether positive or negative) and how we process them are very personal. Harper Lee captures this idea perfectly in the dialogue between a father and his daughter in To Kill a Mockingbird. The father says, “Don’t judge a man until you’ve got inside his skin and walked around in it.” Everyone’s reality is different. It’s rarely helpful to compare your child’s journey to that of others or to compare yourself as a parent with other parents. We risk invalidating our individual experiences when we engage in comparisons. The band, For King and Country presents this idea beautifully in their song, “Relate.”
“I don’t know what it’s like to be you.
You don’t know what it’s like to be me.
What if we’re all the same in different kinds of ways. Can you relate?
We both know what it’s like to bе hurt.
We both know what it’s like to feel pain.
Can you relate?”
Second, I frequently remind myself that we are not entitled to a pain-free life. It’s a brutal truth to swallow, but none of us are immune to life’s hardships. I believe that children who experience hardship early in life tend to “grow up” quicker. I have seen this in my son and his struggles with AS. Miguel is now 20 years old. These past five years have been challenging, and he has had to make life adjustments. I have seen him grapple with existential questions regarding his life purpose and faith. Simultaneously, I have seen him develop into a mature, loving, and caring young adult. He is passionate about life. He has dreams and goals he hopes to achieve. Yes, he has had his difficult moments, but he has learned to pick himself up.
Finally, I have realized that I am my son’s role model. I am not only here to support and encourage him, but I believe I also have a responsibility to teach him how to manage his illness and seek appropriate medical care. This entails teaching him how to advocate for himself. It is essential to have a knowledgeable, supportive, and compassionate team of specialists. Miguel learned this firsthand when he was diagnosed. There are no words to express my gratitude for the care my son has received through Rady Children’s Hospital in San Diego. This is especially true for the rheumatology department. His rheumatologist, Dr. Sheets, has been a true blessing. He was quick to diagnose my son and prescribe appropriate treatment to manage his pain and slow the progression of the disease. Dr. Sheets has always been fully present and attentive to our concerns. He is quick to take action when problems arise. He has supported us both and has always greeted us with a smile. His wonderful nurses, Donna, Esther, and Sheryl, have been the most outstanding nurses. Having a caring and patient team has made Miguel’s AS easier to manage and process. I am confident that this positive early experience has laid a solid foundation for Miguel to seek the best care possible once he is on his own.
No one is entitled to an easy life. For this reason, a passionate community of experts, parents, and caregivers is crucial, especially when we feel outmatched and isolated. Our challenges may be different but reveal a common truth: Our trials do not define us. We define who we become from our trials.
If you would like to connect with other parents and caregivers, you can join Belén’s two support groups. If you are interested in additional JSpA resources, please check out spondykids.org.