Coping as a Parent with a Child with Chronic Illness
It takes a village to raise a healthy child, but when that child is chronically ill, the whole family feels this pain. Especially to the parents of a child who has been diagnosed with a chronic illness, the experience can be filled with feelings of uncertainty, anger, anxiety, or sadness. Here are five ways to cope, carry on, and withstand the journey ahead.
Find a support network
When caring for your child with a chronic illness, it can sometimes feel like no one in your circle of friends or family understands what you’re going through. However, thanks to the power of connectivity in the online world, there are now ways to reach beyond your existing network to find others who share your journey. For example, use online discussion forums or social media groups to find others in a similar situation. Meeting new friends online who can relate to your experience will provide a sense of relief, help break that isolation, and get advice and encouragement when you need it most.
Stay organized
The world of medical appointments can feel overwhelming. Not only are you forming new relationships with each new doctor, nurse, and specialist, but it can also be challenging to stay organized and keep track of every report, diagnosis, and test result. Invest in a trusted online service like VITALL, whose Health Information Managers take complex medical records (like those of a chronically ill child) and store them safely for access anytime and anywhere. For example, VITALL can integrate with and track 300 medical devices and the resulting biometric data.
Eliminate digging through a binder of papers with your child's health - all of your medical information, including vital signs and biometric history, can now be digitally tracked by both you and your child’s healthcare practitioners, and securely accessed with VITALL.
Don’t define your child by their disease
It can be easy to let chronic illness take over your entire schedule. Even if treatments become more intense, your child will still crave normalcy. No child wants to be defined by their disease; parents can play a positive role in keeping childhood fun between medical appointments by celebrating birthdays and other milestones, and saying yes to time with friends. You can also help to keep your child’s mind active with schoolwork and reading, and set up time to relax with movies, videogames, and crafts.
Make the hospital feel like home
If your child has an illness that requires hospitalization, make the hospital feel like home. This can mean bringing in family photos, stuffed animals, or a cozy blanket, or decorating the walls with special artwork and posters.
Take time for yourself
Last but not least, take time for yourself. Parents are the caregivers who bear the financial and emotional responsibility of looking after a child with a chronic illness. Try to prioritize taking time for yourself too, partaking in activities that’ll take your mind off things like catching up with a friend at your favorite cafe, playing a round of golf, or indulging in social activities. If you’re craving time alone, run a bath, take a walk, or read an inspiring novel. It’s okay to feel sad and grieve, but try to remember that your child is in the good hands of caring professionals and you’re not in this alone.
