When you become a parent, your life revolves around your child(ren). This is a natural process, and it’s beautiful. But if you’re faced with something unexpected in your personal life—accident, severe illness, or debilitating ailment—everything about who you are and how you want to parent can suddenly shift.
Navigating parenting after becoming chronically disabled isn’t easy. It’s emotionally and logistically taxing. And it challenges your ability to be present for your child(ren)’s needs in the way that you want to.
However, with supports, resources, and community, your post-diagnosis life and your parenting journey can still be filled with love, hope, adaptation, and purpose.
Here are some (candid) thoughts on navigating parenting after becoming chronically disabled. . . from a parent on that journey right now.
Start Seeking Support & Building Community
The most important thing you can do for yourself after a diagnosis is seek support and community. Oftentimes, parents (and especially mothers!) are hesitant to really lean on their support systems. Whether this is because of fear around rejection, not wanting to appear helpless, or even shame—the truth is that you need community—and the sooner you ask for it, the happier and healthier your journey will be.
Lean on your spouse or partner, your family members (even parents!), and friends. Even consider people in your outer circle, for example, neighbors, acquaintances at your church or other support network, or even parents of your children’s friends who may be able to support with transportation needs or playdate rotations.
In addition, seek out communities within your specific area of need. Navigating parenting after becoming chronically disabled is an experience that not everyone can relate to, no matter how hard they may try. So, it’s helpful to find support groups (online or in-person) with people who really get it. This way you’ll feel less alone.
Outsource & Step Back Where You Can
When you’re a parent, you want to do and be it all. But sometimes you just can’t. So, it’s critical to find ways to outsource what you need so that you can focus on what’s the most important.
Take inventory of your day-to-day responsibilities and find ways to outsource what you need so that you can focus on what’s the most important. For example, think about things like transportation (for yourself – to and from medical appointments, for your children’s athletic/music events, etc.), meals and meal-planning/grocery shopping, watching younger children, keeping track of bills/payments, etc. When you take a close look at your mental load and sift through what’s essential, it can help you be more intentional about how/what you ask for help.
Seek Medical Advocacy
One of the most challenging parts of life after diagnosis is adapting, adjusting to your new needs and speaking up for yourself.
Be open to the possibility of supports: accessibility apps, voice-activated devices, physical supports, mobility aids, and even a medical advocate (someone who can support you in your appointments, help you understand your diagnosis, and vocalize your needs) may all be helpful options for you, depending on what you need.
You may also want to consider what’s called the “spoon theory,” an approach for prioritizing activities (that truly matter in balance) within your physical or mental constraints. It’s not about doing everything but rather about doing what matters most.
Rewrite Your Goals & Purpose
Living and parenting with a chronic disability doesn’t mean your dreams—for yourself and for your family— are unattainable. You may just need to reimagine what your story looks like, and be open to creating a new path.
Setting meaningful goals, pursuing new creative outlets, exploring new career paths, or simply leaning into self-compassion, are all very important in maintaining a sense of purpose. And, as you reimagine your life, it can sometimes lead you to discover hidden talents or passions along the way.
However, don’t forget to slow down, be patient with yourself and your progress, and practice mindfulness. Just because your life is different now doesn’t mean that you have to push yourself to “catch up”.
Navigate Your New Journey With Self-Love
There’s no simple or clear-cut answer to “now what?” Navigating life and parenting after becoming chronically disabled can be an unpredictable rollercoaster ride that is filled with challenges—but opportunities, too.
When you look for support, adapt to new realities, and remain open-minded to possibilities that come your way, living with chronic disability may lead you to growth and self-discovery.
Featured Image Credit: Romain Virtuel