Mother’s day has just come and gone. While I’m not a mom myself, I appreciate the moms in my life and how hard they work. A few years ago, I had the chance to help a mom caring for a kid with special needs to visualize her workload and stress levels. I’m going to share that with you — but first, a tribute to my own mom, Kathy.
When I was growing up in the 80s, my mom had lots of plates spinning. She worked as a teacher and school counselor, coordinated three kids with diverse extracurriculars, and still found time to bake a diverse array of baked goods and her famous cheesecakes. She even occasionally sewed an outfit, such as my legendary Easter dress pictured below (I picked out the fabric.)
My mom embodied the styles of the era: tight perm, strong mascara, rouge, Liz Claiborne coordinated sets. She had it together. At the time it was seen as unusual, at least in northern Michigan, for a mom to work full-time. It was so noteworthy that our local news station filmed a story about her, coming out to observe as our family prepared and ate dinner on a weeknight. There we are, clad in loose sweatshirts and turtlenecks, flitting about the kitchen popping in and out of the frame; there she is, exasperated and slightly embarrassed, but finally getting the accolades she deserves.
The mid-80s to mid-90s was a hard decade for my mom. On top of everyday life stressors, my parents bought and renovated our house, and a few years later my autoimmune diagnosis (Myasthenia Gravis, at age 13) brought new worries, doctor appointments, and an open-chest surgery and recovery. Three years after that, she went through her own cancer diagnosis, severe side effects from chemo and radiation, and, thankfully, recovery and remission.
Through it all she was stoic, hiding her fears even as she faced enormous uncertainty about my future with Myasthenia Gravis and her own mortality.
Being a part-time caregiver for a child with a chronic health condition was a job my mom took seriously. She read pamphlets, books and articles, always wanting to understand the latest treatments and what research was underway. I was old enough to manage my meds on my own, but she was always there with support and empathy when I experienced physical weakness or emotional strain from my symptoms.
I am eternally indebted to my mom for everything she went through as my parents formed us into functional, conscientious and socially acceptable people while also staying on top of my health issues.
Lots of moms in my life are now coping with a child with chronic health needs. A friend’s kid was just diagnosed with type 1 diabetes; another friend’s kid is dealing with unmanaged post-Covid POTS; and my sister’s child has severe allergies. Managing their kids’ health brings a whole separate work stream and requires energy, attention, and vigilance. Case in point: my sister was up late last night grinding sesame seeds and macadamia nuts with a mortar and pestle, so that she can continue to micro-dose these allergens to her 2-year old, per doctor’s instructions.
Awhile ago, through my startup Pictal Health, I worked with the mother of five kids, four of them with chronic health issues — including one with Cystic Fibrosis. Let’s call her Janelle. Like other clients she wanted to visualize her own health journey; but she also wanted to see how her many stressors and jobs fit into the picture.
It was a fun and interesting side exploration. I learned about Janelle’s obligations and tried to understand how they affected her over time, and I played around with ideas for presenting this visually.
Below is where we landed, with dates changed and details removed for privacy reasons. Like in much of my client work, the ‘data’ we are visualizing is very subjective; it’s an artistic approximation of the amount of stress or effort associated with each activity over time. And Janelle wanted to project stress levels into the future, based on her best guess. She was anticipating that her stress might decrease slightly in the near future, giving her something to look forward to and prepare for.
Altogether, the work that Janelle has put in to support her kids’ health was enormous: thirteen years of dealing with insurance companies, counting pills, keeping up with chest physiotherapy, traveling out of state for appointments, coping with multiple hospitalizations per year, volunteering for CF, and managing a household with 5 children (4 of them with chronic conditions), all while maintaining full-time work. It was validating for her to see how these work streams overlaid over time and visually created the chaotic stress cloud she’d been living in for quite some time.
I noted that the last 3–4 years look like a stormy sea swimming with sharks.
On reflection, Janelle wondered:
“I wonder who in healthcare would most benefit from seeing something like this and what services/supports they could subsidize since we know there are legit health impacts to chronic stress.
I feel like my insurance company should care. Or if pharma companies really want to help, maybe they provide resources for caregivers rather than stupid patient engagement solutions that take more of my time.”
💣 Couldn’t agree more!
This type of exploration is atypical for me; normally I focus on someone’s high-level journey and symptoms. Stress may be a part of that, but if someone really wants to dig in and understand their stress levels over time, I usually recommend they track using an app. But I think we were able to create something meaningful even without tracking, and I found it visually pleasing, reminiscent of a sunset — a slight 80's beach vibe.
Although the focus of this visual is on the ‘work’ of caregiving, chronic patients themselves also frequently take on a huge administrative burden: dealing with insurance, managing meds, going to inconveniently-scheduled appointments, etc. This workload graph could easily represent a patient’s own burden of self-care.
But let’s bring it back to the moms. As we’ve established, many moms manage multiple jobs, work that often goes unappreciated. I want to say thank you and belated Happy Mother’s Day to all the moms out there — I appreciate how hard you work every day of the year.