It wasn’t easy to share the news with my team.
“My daughter’s health has declined over the past few months,” I said carefully, watching the faces of the people I supervise. They all knew that Ellie withdrew from college because of health issues (read more of our story here and here), but they didn’t know how bad it had gotten.
A few of my employees looked stricken. Others’ faces were unreadable. One looked confused.
“It’s been tough to get into specialists who can help Ellie with the POTS1 diagnosis, but we have some hope,” I continued, taking a deep breath. “Ellie will start an intensive program this month. I wanted to let you know that I’ve talked with my boss and I’m temporarily reducing my work responsibilities to take care of my daughter. I’m committed to being there for all of you and our team’s programs, but I’ll be saying no to any other requests or opportunities that arise.”
“That sounds wise…”
“Thanks for telling us…”
“My sister had POTS for six years…”
“I’ll be praying…”
I walked away from our team’s weekly call feeling both relieved and nervous. I felt vulnerable admitting to my team that my daughter is desperately debilitated. But it also felt freeing to take off my director hat, which is full of hopeful optimism, a laser-like strategic focus, and employee development goals, to show my humanness. I have a sick daughter. Your boss is not invincible. I cannot do it all. In fact, there are times lately when I feel like I cannot do very much because of the weight of my daughter’s illness.
The Year I Did Less at Work
I am fortunate to work for a nonprofit that cares about their employees’ health as much as their productivity. Three years ago, when Ellie reached a crisis state with her depression, eating disorder and anxiety, my boss supported me in reducing job expectations so that I could care for her. I was floored by my boss’ generosity yet uncomfortable with appearing so needy. I didn’t realize how much I had woven characteristics like commitment and competence into my identity until I felt unsure about my ability to embrace them.
Ellie’s mental health crisis lasted almost a year. It included intensive supervision, strict re-feeding according to the principles of Family Based Treatment, two hours of daily drives to a treatment center, and coordinating telehealth appointments. Beyond that year, it meant countless moments of calming Ellie down when anxiety took over and propping her up when depression dragged her into the pits of despair. It looked like cajoling her to go to school, coordinating tutors, and coaching her to do homework. After that year, Ellie’s mental health stabilized, supported by a team of therapists, a dietician, and a psychiatrist, as well as supportive teachers and a 504 plan.
Looking back, I wonder how I kept up with a full-time job, even with an understanding boss and reduced expectations. I worked from home on a flexible schedule. Perhaps I missed some meetings. But I refused to cancel any major programming, because the consequences of doing so felt too costly. When Ellie was gone all day in a partial hospitalization program or Residential, it was easier to keep up with work; when she engaged in a virtual intensive outpatient program, it became much harder. I did my best to be a responsible employee, typing emails and hosting Zoom calls while Ellie watched YouTube across the room. From the outside, you might not have known that our family was going through a crisis. But I was barely keeping it together.
How Working Parents Juggle Caregiving for Teens in Crisis
I’ve talked with many parents who have walked with a teen through a mental health crisis. There are no easy answers in navigating jobs during a season of intensive caregiving. It seems that most parents fall into one of three camps.
Taking Time Off: Some parents take a leave of absence from their jobs to care for their kid, using either intermittent or full FMLA (Family Medical Leave Act). I’m grateful for this protection from the federal government to keep a job during a health crisis, even if it is limited to twelve weeks (perhaps sixteen in some states) and often unpaid. I hear many teachers choose this option.
Some parents quit their jobs altogether because they aren’t sure how long their caregiving responsibilities will last. Some choose to eliminate job stress because the stress at home is already so high. Some parents quit because the job doesn’t offer a remote or flexible option. For whatever reason, they pause a career to focus on their family, which is both noble and weighty.
Keep the Job, Do Less: Some friends, like me, reduce hours or expectations, supported by understanding employers and a flexible schedule. Some of us work in industries where we cannot easily enter back into a similar job if we leave altogether, but we can slow down the pace. For some of us, work is also a welcome respite, a place where it feels easier to see our contributions in tangible ways, especially on the days when our teens seem to tread water. At the same time, we might face tensions such as the frustration of how little we can contribute, concerns that others may get opportunities that we won’t, or the possibility of a resentful team member. We have to be ready to accelerate the pace once our teen has stabilized, even if we don’t feel fully ready.
Stay in the Game: Other friends have jobs where they cannot lighten their job load. Perhaps their industry doesn’t have a slow lane. Perhaps they are self-employed. Maybe they work at a job that doesn’t offer much paid time off. Maybe their financial realities make it impossible to make a change. These friends seem exhausted all the time; they feel that they cannot be or do enough at their jobs or with their recovering teens. They may feel like they are swimming upstream, kicking endlessly to keep up. One friend, a leader in the corporate world, battled insomnia, her body rebelling against her attempts to work at a demanding, competitive job while supporting her fifteen-year-old daughter’s eating disorder recovery.
For any of these options, we are not just sorting through what our jobs allow. We are weighing realities like income and health insurance, which become even more important when our teen needs expensive medical care. Without health insurance, our family would have faced an impossible choice between depleting our long-term savings or denying Ellie the medical treatment she needed. None of these choices are easy; in another country, we might have more forgiving options around balancing work and a sick child.
Caring for Ourselves
Wherever we find ourselves, we often need more time and space than we realize or know how to ask for. It is easy to miss the fact that the trauma of a health crisis doesn’t just affect the person who is sick; it leaves its traces on us as parents. Caring for a teen with health challenges is emotionally and physically exhausting. How do we give ourselves the space to reflect, to rest, to recover ourselves as we support our child’s recovery?
As I continue to walk with Ellie in another health crisis, I am thinking more deeply about my capacity. Ellie and I joked yesterday, on the hour-long drive home from her medical treatment, that this schedule reminds us of her days in the eating disorder outpatient program. When we arrived home, I was filled both with budding hope for Ellie’s healing, and weighed down with unexpected fatigue. I’m realizing that I’ll need to set even firmer boundaries around my work responsibilities to take care of myself as well as Ellie.
Whatever path you have chosen around balancing work and your child’s recovery, I hope you know that you are an unsung hero. The mental, emotional, social and physical demands of nurturing a child’s healing journey are significant. In the day-to-day grind of helping a teen heal, it is easy to focus on our mistakes, our teen’s resistance to recovery, the fight we just had, or the ways we feel like a failure. It’s even easier to feel badly about how we are managing a job, a marriage or other children in the midst of a crisis. But we can remember that our investment in our child’s recovery, however imperfect or messy, is still a heroic one. And wherever possible, it’s important to give ourselves permission to say no elsewhere as we say yes to caring for our kids and ourselves.
I’d love to hear your story of how you’ve navigated a health crisis for your child or loved one, and how you made space for yourself as a caregiver.
Grateful for your presence on my journey,
P.S. Before you go, please tap the little ♡. It offers “social proof” and lets others know there’s something useful here. Thanks!
My daughter has a condition called POTS, which stands for Postural Orthostatic Tachycardia Syndrome.
Serena, thank you for writing about your experience. This is so helpful for others who are experiencing caregiving and the challenges it presents.
Thank you so much for sharing your journey. I'm so sorry for what your family is going through. My daughter was diagnosed with cancer two months into the pandemic, and she endured three subsequent years of treatment. I'm a single parent with no state paid leave, so I continued working through her treatment, and it almost killed me. She went into remission in 2022, but my son quickly began struggling with debilitating anxiety- I think he'd held it in all the years his sister was sick, and once she was in the clear, down he went. We're finally, finally stabilizing this summer, but trying to balance work through it all has been harrowing. It breaks my heart that other people are also facing these kinds of challenges, but after four years of feeling totally alone with it all, it helps to read other parents' stories. It reminds me we're not alone.