How to Survive Parenting with a Chronic Illness

Although this was an article that I wrote for FamilyEducation giving advice to parents with chronic illness, it was also a very personal article since this is advice that I struggle to take myself as a mom who feels constantly challenged with parenting while having lupus.

Although I am thankful that I can manage my health issues as well as I do, I know too many of us moms deal with our chronic health issues very privately. Excessive doctor appointments, profound exhaustion, new and weird health problems popping up all the time, the dichotomy of looking fine but feeling terrible, and a whole world of things that you would like to say when someone asks how you are but you can't even begin to mention, etc.

I could write an entire book about how dealing with a chronic illness affects you physically and mentally and also affects how you parent, but in the meantime, in honor of May being National Lupus Awareness Month, here is one of my recent articles sharing the tip of the iceberg.

And cheers to all of the mamas out there privately struggling with chronic illness who keep putting one foot in front of the other as a parent every day!

Although parenting with chronic illness has recently become a hot topic in the news with Selma Blair opening up about what it’s like to be a mom with multiple sclerosis, chances are this is not a new topic for you or the circle of moms in your life. With an uptick in autoimmune diseases like lupus and fibromyalgia and with Lyme disease spreading at near epidemic proportions in certain areas of the country, it is rare for communities to be untouched by the experience of parenting with chronic illness. According to the  American Autoimmune Related Diseases Association, “Of the 50 million Americans living and coping with autoimmune disease (AD), more than 75 percent of them are women.” Mothers are suffering, yet they are still doing their best to be the best parent they can possibly be and keep up with what can often feel like impossible parenting standards within societal norms.

Parenting with chronic illness is challenging for many reasons. Many of these illnesses come with profound exhaustion. Parenting is a 24/7 job, and all parents feel tired. When you add on the level of fatigue that can accompany chronic illness, many parents feel like they are drowning.

Another issue that parents with chronic illness can face is the fact that our physical challenges can often be described as an “invisible illness.” Living with an invisible illness means that we can appear to be perfectly healthy at first glance. Even our closest family and friends may not be aware of the daily struggles that we face. We are held to the same standards as everyone else, and we do our best to keep up with parenting and work and life without the understanding and offers of help that may accompany more visible illnesses or physical challenges that display themselves more obviously to the casual observer.

Though it is often a constant and ongoing battle to manage the physical aspects of having a chronic illness, there are small steps that we can take to help ourselves along the parenting journey. Here are a few tips:

Own Your Story

In tandem with the outside world not being aware of our struggles, women with chronic illness can often downplay the effects and challenges of parenting with chronic illness to ourselves due to not feeling seen. It’s important to acknowledge our limitations and struggles because if we can’t name these things, how can we expect others to do so?

In addition to being honest with ourselves about what is hard, we have to be honest with our families as well. It can be difficult to talk to children about illness. We don’t want to scare them or make them worry, but we also need them to understand that sometimes mommy doesn’t want to play because she doesn’t feel well, not because she doesn’t want to. We need to be honest about how a schedule filled with doctor appointments might keep us from doing all that we want to with our kids.

Sharing the truths of our illness with our children on an appropriate level can also provide teachable moments to develop more kindness and compassion in our kids. We can help them understand that we can never assume we know what other people go through and that everyone is going through more than they may think. These life lessons can be invaluable.

Ask for Help

It’s amazing how something so simple can feel so hard. Asking for help triggers emotions for all of us. We set high and often impossible standards for ourselves as parents. We want to be able to do it all.

The fact of the matter is that even parents who do not live with chronic illness need to ask for help on a regular basis. We have to stop judging ourselves and take the time to build a community of people that we trust - both with our own friendships and with our families. It truly takes a village.

Having people in our lives that we know we can call at the last minute to pick up our kids from school when we’re stuck at a doctor’s appointment or to drop off dinner when we’re having a particularly challenging week is invaluable. Acknowledging when it’s a better parenting situation to arrange a playdate for our children than try to manage an afternoon of being with our kids when we’re feeling our worst is not easy, but the more we put it into practice the more reasonable it seems when we need to do this. Responsible and caring parenting doesn’t always mean that we are the best person to be there or to complete a task for our family.

Checking In With Our Children

We may hesitate to check in with our kids about their emotions concerning our illnesses, especially if they appear to be doing just fine. Unfortunately, just like we often do ourselves, children can hold their feelings in or not even realize what their feelings are until they are given the space to talk about them and work through it.

If we don’t take the time to check in, children might begin to harbor feelings of resentment, sadness, or misunderstanding. Though we may have the feeling of poking a sleeping bear in broaching these conversations, it will always feel healthier in the end to share our emotions, both for the kids and ourselves.

Parenting with a chronic illness may not line up with the vision that we had for ourselves and our families, and taking the time to grieve the loss of that vision so we can accept our new normal is important. Honesty is the major theme for how we can best parent with our challenges. We need to be honest with ourselves, our families, and with the outside world in order to be the best parents we can be. Though that sounds simple, grounding ourselves in that place of honesty can often feel harder than the physical challenges we face. Still, if there’s anything having chronic illness has taught us, it’s emotional strength and determination, and if we apply those gifts to our needs for honesty in the parenting process, we can be the parents we hope to be - no matter how different it may look from our original vision for it.

Do you parent with a chronic illness? If so, we would love to hear about your experience in the comments below.