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Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.
How Can I Fit Chronic Illness Into My Schedule?
Dear Ada,
I’m no stranger to chronic health conditions that require daily maintenance and attention. Over the years I’ve devised a work schedule with equal parts rest and productivity that truly works for me. On the well-managed days, I meet my goals with a smile and feel content with life. Then come the curve balls. Do you have any suggestions for handling the unpredictable nature of chronic illness? For example, on Christmas morning rheumatoid arthritis joint pain left my hands weak and limp, erythema multiforme (EM) lesions erupted in my mouth causing pain when eating or talking and a healthy dose of fatigue topped it all off, just hours before hosting a holiday lunch. Maybe I just need a crystal ball?
~ Melancholy in the Midwest
Dear Melancholy,
I wish that I could give you a crystal ball. Short of that, though, all anyone can do to manage the unpredictable nature of chronic illness is this: focus on being proactive, and manage your stress.
Because you’ve adapted a work schedule that fits around your health conditions, my guess is you’re familiar with my first suggestion. Being proactive with every possible task in your life gives you the freedom to take downtime when unexpected symptoms and side effects derail your days. This means kicking to the curb any “Why do today what can be put off till tomorrow” instincts you might have, and developing habits that allow you to address everything immediately, so nothing is lingering in your mind or holding you back from resting as much as possible if pain or illness suddenly strikes. Carpe diem, in other words.
There’s another reason it’s important to get things off your plate as soon as you can: long to-do lists stress us out, and according to the National Center for Health Research (NCHR) says that stress actually increases the likelihood of becoming ill. So when you’re chronically ill and you’re behind on what needs to be done, there’s a knock-on effect: you get stressed out, which makes it more likely that you’ll get sick, falling further behind, which will just stress you out more, and so on.
Which brings us to stress management. There’s no one-size-fits-all approach to calming yourself down when stressed out: exercise, meditation, yoga, sleep, hanging out with friends, journaling, swimming, painting, Netflix-and-chilling are all equally valid methods of calming yourself when stress creeps in. The important thing is to find what works for you, and then make sure to find time for it every day… even (or perhaps especially) when you feel like you’re falling behind what you need to do in other areas of your life, or coming on stressful times, like holidays. Remember: self-care is the most important responsibility any of us have, because from it, everything else follows.
There’s no such thing as crystal balls, and none of us can see the future. All we can do is do our best to take care of ourselves in the here-and-now.
Photo by Matthew Henry from Burst
What Books Should I Read My Kids So They Can Understand Disability?
Dear Ada,
I love to read and I want to instill that same love in my children. However, I can’t seem to find any good books that showcase a wide range of children from different ethnicities to abilities. My niece is reliant on a wheelchair and my nephew has autism and ADHD. I’d love to find kids books with characters of different abilities so my children can see characters similar to their family members on the pages. The books don’t have to be about health issues or disability per say, but I’d love to have my children read those too. Any ideas?
~ Mom Loves To Read
Hello Mom,
Congratulations on being so intentional in your parenting! Reading is just so important for children, not just so they can see and identify with characters like themselves, but also so they can be exposed to the vast and beautiful spectrum of human diversity. Here are four books I’d particularly recommend as a jumping-off point, because they feature characters similar to your niece and nephew.
In both it’s Hard to be a Verb and My Mouth is a Volcano, written by Julia Cook and illustrated by Carrie Hartman, the main character, Louis, has ADHD. Because of that, he often can’t control his impulses very well, helping kids gain a more empathetic understanding of what kids living with ADHD are going through.
Hello Goodbye Dog, written by Maria Gianferrari and illustrated by Patrice Barton, is a great book featuring a young girl in a wheelchair, which focuses less on her abilities, than on her dog, who can’t seem to stay away from her while she’s at school. It’s a lovely introduction not just to what life is like for kids with mobility-impairments, but also introduces the concept of service animals to young readers.
Since We’re Friends, written by Celeste Shally and illustrated David Harrington, gives neurotypical children a chance to understand their peers with autism. A surprising number of children’s books with autistic characters focus on those character’s efforts to be “normal.” What’s great about Since We’re Friends is that it flips the script, showing ways in which a neurotypical kid adjusts his behavior to make his autistic friend more comfortable.
Looking for more? There’s no shortage of suggestions online for children’s books talking about chronic illness or disability. The important thing is to keep reading to your kids, since it’s been proven to improve empathy skills and emotional intelligence. Keep exposing your children to lots of good books, and I promise you, they’ll grow up to be inclusive humans.
Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.
