Parenting requires advocating for your child’s well-being while creating a healthy home life environment, especially when facing challenges. But the life of a teenager can be riddled with additional stressors such as dealing with the realities of a chronic illness. A chronic illness like a Juvenile Spondyloarthritis (JSpA) diagnosis affects not only the child but the entire family unit. Maintaining a daily routine, providing emotional support, and implementing self-care to stay balanced are all key elements to help your child live a healthy lifestyle diagnosed with a rheumatic disease.
When your child is first diagnosed with spondyloarthritis, you begin to strategize the next steps. For Brooke Roe, this meant taking it one step at a time and balancing her worry with gratitude. “I’ve since learned to focus on one thing at a time and to balance my worry with gratitude for how far my son has come,” said Roe, mother of Andrew Roe who received an Ankylosing Spondylitis (AS) diagnosis at the age of 16.
Steps After Diagnosis:
One action Roe implemented after the diagnosis was to ensure her son understood he was not alone. Roe and her husband approached the diagnosis as a team and provided Andrew with the necessary emotional support while staying focused on the benefits of the treatment. This helped to develop the confidence Andrew needed to stay motivated and focused. During this time, Brooke conducted extensive research and consulted with Andrew’s rheumatologist about her findings. She also kept a notebook where she stored concerns, questions, and new symptoms to discuss during doctor visits. Most importantly, making Andrew’s mental health a priority. There’s an emphasis to normalize and discuss their emotions as a family.
Stick To a Daily Routine:
Sticking to a daily routine helps to keep stress at bay. The Roe family is always on the go; work, school, and attending doctor’s appointments keeps them busy. “We use a family calendar to organize our schedules so we can all attend doctor’s appointments,” said Roe. Shifting the focus to the life ahead rather than the diagnosis creates normalcy and reduces stress.
Stress is an emotional response to an event or challenge, according to Dr. Lauren Smith, Ph.D. It can lead to flare-ups, anxiety, depression, and aggravate chronic pain. Managing a chronic illness can be challenging for your family, especially as the caregiver. Roe relies on her husband, friends, and a therapist to help her work through the overflow of emotions. “Just as our kids look to us for help in acknowledging and processing their emotions, we need to look to others for support in coping with supporting a child with an autoimmune illness,” said Roe.
Taking walks and incorporating self-care and mindfulness such as meditation are great ways to manage stress. Roe also practices yoga and breathing techniques to help lower anxiety and stress.
Taking care of yourself is the most effective way to take care of your child. Self-care for Roe means date nights, long hot baths, and a healthy sleeping schedule. According to Roe, the benefits of implementing self-care into your daily routine increases your emotional and physical well-being. In addition, this helps to become an influential role model for your child, teaching them how to seek appropriate support.
In essence, living with a chronic illness is life-changing for the entire family. Sticking to a daily routine, implementing self-care, and consulting with your healthcare provider, helps to produce a safe space for your child to live a better life.
Reference: The Link Between Stress and Chronic Disease: Rethinking Stress Management.
Spondylitis Association of America