Both parenting and managing chronic illness are experiences filled to the brim with unpredictability.

Every parent is on a wild ride, trying their best to handle each twist and turn that comes with caring for a growing human with no instruction manual – and some days to just hang on for dear life!

The journey of living with complex and chronic health conditions is no more certain, marked by the capricious nature of flares and filled with countless pivots.

Despite intentional preparation and carefully-laid plans, the reality is that anything can happen:

Your child has a total meltdown while you’re out doing errands.
Some version of the bubonic plague descends on your partner and they’re down for the count.
The midday nap becomes a thing of the past and with it your only quiet time to fit in a bit of work (or your own rest time).
Symptoms that had disappeared for a while suddenly return with a vengeance.

In this piece, you will get to hear the stories of 3 women who are navigating both journeys simultaneously and figuring out what it means to be a parent living with chronic illness. I’ll let them introduce themselves:

My name is Erika and I’ve lived with multiple sclerosis since 2005. My 9-year-old daughter and I live in Chapel Hill, NC with our petite cat Olive.

I’m an occupational therapist, business owner, parent of 2 littles, a dog, and a cat. My two kiddos – a son who is 10, and a daughter who is 7 – are busy with sports, dance, and other activities, which I love being a part of and Uber-driver for. I also live with Sjögren’s syndrome.

I'm Jen – business owner, chronically ill human, and parent of a very energetic 3 year old! I live in Manchester, UK with my husband, son, and two cats and our very pesky dog. I'm a business coach, a work-from-home mum, and I live with a neurological condition called Chiari Malformation.

Balancing caring for others and caring for yourself

Navigating chronic and complex health conditions adds very unique layers to the parenting experience. Each day is different and you never quite know what’s going to happen – with your kiddo(s) and also with your own body.

Jen shares, “My neurological condition affects my ability to parent every single day. I experience vertigo, dizziness, numbness and tingling, migraines, fatigue, and brain fog. All of this means I often need to rest at times throughout the day and I often can't play with my son as much as I would love to have the energy to each day.”

Symptoms that persist, flare, and fluctuate often impact a range of parenting activities, from direct caregiving and playing together to household chores. Natalie echoes this, saying,

“My health condition brings about a fluctuating level of fatigue from day to day and week to week, as well as fluctuating joint pain. Sometimes it's manageable with Ibuprofen or a heat pack, and other times the dull ache and intense exhaustion don't let up.
Joint pain is no joke - the dull, constant aches make it hard to type, fold laundry, and even rest comfortably.”

What both Jen and Natalie identify is that it is simply not possible to compartmentalize and ignore your health condition in the context of parenting. The ever-present question then is, “How do I balance these roles?”

This is a question with no fixed or right answer, but rather one that invites reflection and reassessment every day, hour, and even minute.

Erika shares about a specific time in her life:

“At the beginning of the pandemic, we recently moved to town and it was time to get the chemotherapy pills that work on my disease. I was already still exhausted after packing and moving myself and my daughter away from our family.
Luckily I had already hired two back up people, one for childcare and one for picking up groceries and prescriptions and putting the garbage can to the curb and light housework. The light housework ended but we survived.”

Erika recognizes that, in that season of significant transition, she needed to find ways to care for herself so that she could continue to be present for her daughter. A big piece of her process was prioritizing and releasing the myth of infinite capacity by asking for help and being OK with a less tidy house.

It can feel like an impossible balancing act: on one hand being the best parent possible and on the other taking good enough care of yourself in order to be that present, loving, engaged parent.

“I feel like I am always juggling glass balls, and that my own health takes a backseat most of the time,” Natalie shares.

When push comes to shove, caring for children understandably needs to take priority, especially when the stakes are high. Erika reflects, “When my daughter gets sick and I am running on adrenaline, I expect and plan for the crash that will come afterward.”

Dealing with the spirals of stress and shame

Being afraid that you’re not doing enough or doing it right are pretty universal human experiences, especially when it comes to parenting. These feelings can be amplified when dealing with the constraints and uncertainty of changing health conditions.

Natalie explains that navigating explaining and being understood by others as well as managing internal pressures can create a lot of distress in the day-to-day:

“On the outside, even to my own family, I look ‘fine.’ It's hard to understand and empathize with someone when they go on with their day, including managing household tasks, running a small business, working a grueling job, and even exercising.
I also feel mom guilt for not participating fully (running after the soccer ball, suggesting we play outside, or coming up with what to do) and not being fully mentally present at times.”

Jen echoes this sentiment in her own relationship with worth and self-judgment in her role as a parent:

“So much of what's hard about being a parent with chronic illness, for me anyway, is the story I tell myself. I often feel not good enough as a parent because I have to take things slower and often rest.
Some of the most important work I have to do is love myself through it and accept my symptoms instead of judge myself for them.”

This kind of self-compassionate approach is not easy and, as Jen notes, takes intentional work. An important part of the process is grieving what is not possible right now, allowing yourself to feel those feelings without pushing them away.

What are the hopes and expectations you have/had for parenting in general and in your very specific life?

Let them be named; let them be seen. Bring kindness and tenderness to the struggle.

Then allow yourself to create your own framework, your own path for parenting while navigating health challenges. How can you root into trusting that you are more than enough for your child, your family?

Consider what “shoulds” you can release and focus on doing what works for you and your family.

“I plan large periods of rest every day when my child is at school. I can’t rush so I make our family schedule out with plenty of time so it’s only the rare occasion that I feel I am rushing.
We simply cannot do everything that we or other family and friends want us to do. Sometimes they understand, sometimes they don’t.” —Erika

Connecting with others and leaning into support

A self-compassionate approach invites not only self-kindness and mindfulness around difficult experiences. It also welcomes us to connect to common humanity – the reality that, while our stories are unique, we are not alone in our struggles and suffering.

All three women brought up how deeply important connection and community are along the journey.

Jen names two of her biggest supporters, who keep her centered and grounded in her worthiness: “I have a close friend who also is a parent with a chronic illness which really helps to have someone in my life who gets it - and most of all my husband is the biggest support as he facilitates the rest I need and reminds me every day that I am a good enough mum.”

As you likely already know, delegating and asking for help is an essential part of being human, including being a human living with chronic illness. Sometimes that help comes from within a family system, but it can also come from an expanded vision of community.

For Erika and her daughter, support comes in the form of having trustworthy, paid help with household management and transportation.

“I prefer to go without some things in order to hire someone to help me with groceries, errands, getting on the ladder to change lightbulbs, etc.
Every week for three hours I know I will have someone to help with the things that I need regularly, and things that pop up. I pay my trusted childcare provider for occasional trips to the park when I just can’t and weekly to take my daughter to school.”

Natalie shares that both social media and in-person networks of friends are also hugely important for maintaining well-being and riding the waves of life:

“One connection was through a t-ball team (we were both moms of kiddos on the team years ago) and we reconnected, so I'd say kiddo activities do help, whenever I've put myself out there and made continual efforts to stay connected.
Apps like Marco Polo help - you can use it as a verbal diary and know that a trusted person on the other end will hear you!”

Beyond parent- and family-related activities, it can be really meaningful to find spaces for exploring your own interests and connecting with others who are trying to prioritize whole-self wellness.

“I was part of a Creative Artist with MS phone group. There would be some talk of disease and some talk of the difficulties of being understood by family and a lot of talk about still exercising the creative muscle no matter if the body doesn’t perform as it used to. Everyone with MS is different, but there are some overlaps with many chronic illnesses.
I’ve found comfort in those groups, like the ones Lindsay offers! It feels good to be with people who are actively trying to be kind to themselves.” —Erika

As Erika mentioned, the Root to Rise groups I run are meant to be one of those special places where folks can find compassionate community, while also learning practical strategies for navigating daily life with more ease.

It is always an honor and delight to see the authentic connections and positive changes that emerge from these 7-week cohorts!

Finding joy in the midst of the mess

In reflecting on the human experience, Mary Oliver writes, “We shake with joy, we shake with grief. / What a time they have, these two / housed as they are in the same body.”

Life is a whole lot of everything all at once.

We can wait for a time when things are calmer or better to find the joy, but we might be waiting a long time! Each woman had specific ways they practice tuning into joy in small, everyday ways.

Even when symptoms flare, Natalie reflects that she looks for other ways to engage with her kiddos and just enjoy their presence “even if that means watching them rough house or play video games.”

Embracing the good days and finding glimmers on the hard ones was a common theme.

Jen says, “We read books, we play with trains, we go for walks, we curl up on the sofa with an episode of his favourite TV show. Being with him and my husband each day is how I find joy - even with my chronic illness along for the ride too.”

For Erika, it is important to protect time to connect with her body, her daughter, and the world around her:

“Spending time in nature and watching my daughter discover new things and playing games with her. Setting aside a few minutes in the morning to stretch and be grateful for my body and my life no matter how wonky.”

She also shares, “I try to add spontaneous fun family things whenever I can. My car license plate holder reads: ‘Make hay while the sun shines.’ I try to do that.”

Riding the waves of life

There is no right or wrong way to do any of this – parenting, managing chronic illness, riding the waves of LIFE!

The last question I asked each interviewee was, “What is your biggest encouragement for others navigating their own health issues while caring for others?” I wanted to share their collective wisdom and a few tips of my own with you.

Here are 7 encouragements to take with you on your journey:

You are allowed to prioritize your own health.
- Of course this helps enable you to care for others, but it’s also true just because you’re a human, worthy of care.
Find ways to connect compassionately with your body.
- “Be nice to your body. My mom told me that when I was cursing my paralyzed leg. It changed my perspective. Cooperation is better.” —Erika
You get to create your own parenting path.
- “It's okay if your version of caregiving doesn't look like it does for people who don't have challenging health circumstances. It's okay that you have to go slower, that you have to do less.” —Jen
Give yourself permission to rest.

“When the spasms are really bad or the fatigue is utterly debilitating, I rest without guilt. Well, I’m always working on the guilt but I just rest because pushing forward does more harm than good.” —Erika

You are not alone: No one has it figured out.

“Sharing, not being afraid to let even the messy parts show sometimes, can be cathartic.” —Natalie

You are more than enough for your family.

“It is hard - and yet we're still here, showing up for our kids, and doing the best we can.” —Jen

Ask for help.

And let yourself receive it as generously as you offer it to others.

I hope you’ve found something nourishing in reading about the experiences of these three lovely humans. Thank you so much to Erika, Natalie, and Jen for sharing so openly!

Both parenting and living with chronic illness are 24/7 commitments. By that, I don’t mean that either represents all of who you are, the sum total of your identity. Rather, neither is something that can be easily compartmentalized. They can’t just be set aside or rescheduled for a more convenient time.

Even when you are not directly caring for your child, their mere existence in the world shapes the rhythms of your day, your plans, thoughts, and actions.

Similarly, living with chronic illness impacts the decisions you make, the way you structure your life from the minute to the major. Even in seasons of remission or relative stability with chronic health conditions, there are certain activities key to maintaining your whole-self health.

If you’re trying to figure out how to show up as the parent you want to be while managing your own health challenges…

I would love to talk with you! In my 1-to-1 work, I support clients who are parenting with chronic illness in:

Adapting and discovering alternative family activities
Building sustainable daily and weekly rhythms that prioritize quality together-time
Cultivating empowering and functional strategies for managing symptoms
Finding ways to communicate and collaborate with loved ones
Nurturing self-compassion for the journey of parenting with chronic illness

Interested in learning more? I offer free 30-minute introductory calls, so we can find out more about each other and see if it’s a good fit!