I was chronically ill for the first six years of my parenting journey. When my two children were babies, then toddlers, then preschoolers, I struggled with a mounting, all-consuming exhaustion that I could not overcome, no matter how much I rested.
Parenting littles is already an exercise in extremes—it’s extremely challenging, extremely taxing, extremely rewarding—but adding an undiagnosed, untreated chronic illness to the mix can make it feel insurmountable. That was how I felt, as I simply tried to drag myself through each day with no idea what was wrong with me.
I’m now on the other side of diagnosis and treatment, and I can look back at my experiences with a clearer eye. After many long years, I was diagnosed with adenomyosis (a menstrual condition similar to endometriosis), which was causing chronic anemia and my excessive fatigue. And after another two years of trying different treatment options, I had a hysterectomy. Finally, my energy started to return once I healed from the surgery.
Based on my experience, here are the top five pieces of advice I would give to a parent who is living through chronic illness and seeking diagnosis:
1. Self-Advocate with Medical Professionals, Be Persistent, and Trust Your Instincts
I was utterly exhausted and everything—even simple tasks—felt so hard. For many, you’re also in pain on a daily basis. The last thing you want to do is schedule and attend appointments. It’s another thing on your plate, when you’re already struggling.
But it might be the single most important thing you can do for your quality of life. Effective treatment can literally be life-changing for you and your family—it was for me.
Unless you have an extraordinary doctor who is obsessed with getting answers for your health, you will have to be the driving force behind getting those answers. It’s not fair, when you’re already battling to get through the day, but it is the unfortunate reality.
If you think that something is wrong, you need to trust yourself, and be stubborn about it. Do not let medical professionals dismiss you or your concerns. You must be persistent; otherwise, it is so easy to fall through the cracks in the medical system, especially as moms whose wellbeing often feels like it’s the lowest on the priority list. Insist on getting tests, make follow-up appointments, and pursue solutions.
You will need to advocate for yourself. It is worth the time and energy.
In my own journey, I only started to feel better after I had a hysterectomy, which I was not offered by my doctors. I had to proactively schedule an appointment and directly ask for it. And that made all the difference.
2. Rely on Your Village
For those of us fortunate enough to have a supportive partner, or family and friends nearby, one of the best things you can do is let them help you. Can your mom come stay with you and help out? Can your partner take your kid(s) to the park on the weekend so you can rest? If you can afford it, can you hire an occasional babysitter, an after-school helper, or a nanny?
Ask for help when you need it. Just as you would support someone you loved if they were ill or struggling, the people who love you also want to support you. And as an added bonus, your kids will grow their community of trusted adults in their lives, too.
3. Practice Self-Compassion
I’ll admit, I struggle with this one. It’s very easy to get wrapped up in the guilt of not having the energy or capacity to do activities with your kids or get things done around the house. But beating yourself up and negative self-talk will only make the situation worse, causing you to withdraw in shame or even lash out at the ones you love.
Try to notice when you are engaging in negative self-talk, and instead talk to yourself like you would talk to a good friend, or even like you would talk to your child. You would be understanding, empathetic, and encouraging, right? Give yourself the same grace.
It’s also important not to compare yourself to healthy parents and what they’re capable of. Your situation is not the same, and you should not hold yourself to the same standards. Remind yourself that you’re doing your best.
If you want to learn more about self-compassion and how to cultivate it, I suggest checking out Dr. Kristin Neff’s website.
4. Model Resting for Your Kids
Do you want your kids to know that it is okay to rest and take care of themselves?
While you are in the midst of pursuing your diagnosis, you will likely need a lot of rest and you will have reduced capacity due to pain, fatigue, and whatever else ails you. This is the perfect opportunity to talk to your children about what is going on, and model for them what it looks like to care for ourselves well.
Don’t try to hide your condition—kids tend to pick up on these things anyway—and don’t pretend that everything is fine. Your kids should see you prioritizing your needs. This will give them permission as they grow up to do the same, when they are feeling sick, overwhelmed, or burnt-out. In today’s fast-paced hustle-culture world, I think this is a really valuable lesson we can instill in our children.
5. Remove Demands
Wherever you can, remove demands. Constantly ask yourself, “does this really matter?” Does it really matter if we eat on paper plates tonight, so I won’t have to do the dishes later when my energy levels are so low? Does it really matter if the kids only have a bath once a week, as long as they aren’t dirty? Does it really matter if the toys are tidied up every single night before bed? Does it really matter if they use screens right now? Does it really matter if we eat fresh veggies or will frozen suffice? (Fun fact: frozen vegetables are often just as nutritious.)
There are a lot of societal expectations on modern parents that can be discarded, taking some of the pressure off. For example, in my view, tidiness is a nice-to-have. Of course we have to maintain a certain level of hygiene and cleanliness, but anything that is strictly appearance-based just isn’t worth it when you only have so much energy in the day. Especially when all of the toys are just going to come out again the next morning anyway.
Conclusion
You can also reduce demands by using services like grocery delivery, cleaning services, automated delivery for items you regularly restock, etc. If cost is a barrier, this is another area where you could ask for help from your village. (Editor’s note: If you’d like to learn more about how removing demands can be part of your parenting strategy, check out our article on low-demand parenting!)
None of this is easy. But you are not alone. You aren’t the only parent struggling with chronic illness, although it can absolutely feel that way sometimes. I hope that sharing these ideas with you, along with some of my personal experiences, can help you find your way through this difficult time in your life.
Above all else, I want to emphasize that you, and your health, are important—for your own sake, not just because of your role as a mother. You deserve to find answers, and you deserve to get treatment that will make your life better. You are worth it.
