Parenting with chronic illness presents unique emotional and physical challenges. But there are things we can do to help our children – and ourselves – thrive in spite of our illness.
I’m not the mom I’d hoped I’d be. I have – more than once – allowed myself to re-examine the past. And I wonder how I might have parented differently if I hadn’t been ill.
I was diagnosed with non-Hodgkins lymphoma in 2004. My oldest daughter was seven and my youngest was not quite four years old. Without notice, my identity as mom, wife and career woman was eclipsed by a much less appealing identity waiting in the wings: cancer patient.
My cancer was ultimately cured after chemotherapy, radiation, more chemotherapy and a stem cell transplant. But nothing would ever be the same.
Long term physical and emotional effects. Chronic pain from a degenerated disc in my neck. Diagnosis of a rare autoimmune disease 2018. A trifecta of turmoil, to be sure.
It’s fair to say that my oldest, now 23, probably doesn’t remember much of the completely healthy “me”. And the youngest, soon to turn 20, maybe not at all.
And although my “kids” are young women now, I remember feeling like I was failing them because I couldn’t do all of the “mom” things I wanted to do – especially when I was undergoing cancer treatment.
Why parenting with chronic illness is so difficult
One of the hardest parts of parenting when you’re seriously ill or chronically ill is that you are forced to divide your focus and your energy between the two most critical parts of your life: your health and your family.
It’s hard because you’re trying to push through fatigue, pain, and in many cases, physical limitations.
It’s also difficult because chronic illnesses are often unpredictable. There are days – maybe even weeks – when you might feel like you can function in a seemingly normal way. Until you can’t.
Cancer treatment was like that, too. When I had chemotherapy I’d have to lay pretty low for the week. Then I’d ease back into feeling pretty decent. But only until it was time for the next treatment. That became somewhat predictable. Unplanned stays in the hospital, not so much. And then of the course, there was the added burden of uncertainty. Would I survive?
Children need a stable and secure environment
I’m pretty sure that all of the zigging and zagging of adapting a lifestyle to accommodate a chronic illness is confusing for children. After all, they develop a sense of security and safety from a stable home environment and predictable routines that don’t change too dramatically or frequently.
Chronic illness destroys the sense of normalcy you had before. You may feel vulnerable or defeated. And you may even feel “less than” – as though you are a liability.
I did. As a consequence, I felt like I did things half way because that’s the best I could do. Chaperoning a field trip? That wasn’t so easy, so I’m pretty sure I had to pass. Lots of active, outdoor playtime? My husband went solo on that front. Birthday parties with their friends? Sure – but we kept it really simple.
At one point I had enrolled my oldest in ice skating lessons, and when she didn’t advance to the next level she wanted to give up. In an ideal situation I would have tried to encourage her. But I didn’t because I was in the middle of chemotherapy and just didn’t have the energy.
I can remember playing with my girls but there were many times when we’d need to lay the Barbie dolls out on the bed, or play a board game on the bed… because that’s where I needed to be.
And those were just the physical manifestations of how I parented.
Caring for our children emotionally is as important as caring for them physically
Aside from the physical limitations, it’s challenging to be emotionally available to the most important people in your life when your own emotional health hangs in the balance.
I have to assume that I parented differently than I would have if I had been healthy. And not by design, but by default. I did the best I could based on the situation.
And I still beat myself up over it. Asking myself questions I can’t really answer.
Did I nurture them enough? Or did I unconsciously hold back a little because part of me was afraid I’d die and if they needed me too much it might make it more difficult for them?
Did they sense the tension between me and my husband? Did my husband resent me because I was ill? Or did I resent him because he was perfectly healthy and couldn’t understand ?
Serious or chronic illness generally doesn’t bring a couple closer together. It turns up the heat. Gradually. Left unattended, the unresolved issues that were barely breaking the surface come to a furious boil until whatever was there evaporates. Completely.
How parenting with chronic illness affects relationships
Studies have shown that divorce rates are higher among couples when the wife has a serious or long term illness. And there’s no shortage of data that divorce, in most cases, tends to have a negative impact on children.
Even if the marriage survives, children who have a chronically ill parent are at an elevated risk for emotional and behavioral issues. They may exhibit symptoms of anxiety and/or depression, and may feel excessive anxiety about physical symptoms.
It’s complicated – and that is an understatement. There are variations based upon the child’s age, gender, socioeconomic status, duration of illness, and whether the child lives in a two-parent or single-parent household.
It really does take a village
You’ve probably heard the expression “It takes a village to raise a child”. It originated from an African proverb, ‘Oran a azu nwa’.
And it applies here, too, because when you’re parenting with chronic illness you are going to need some help. You can’t do it alone. You and your spouse or partner can’t do it alone, either.
It’s okay to admit it, and it’s okay to accept it. In fact, it’s perfectly okay to ask for help. And you should. Trust me, people want to help.
I am beyond fortunate to have had so many people who helped. And an important part of that was making sure that my girls had as much of a normal routine as possible, a home-cooked dinner, help with homework when they needed it, interactive play, and the kind of nurturing and mothering that every child needs to develop into an emotionally and physically healthy adult.
One of the interesting findings of the study I mentioned earlier is that a parent’s chronic illness impacts children more when the mother is the parent with the illness.
Tips for parenting with chronic illness
Every situation is different, and what works best will be influenced by many factors: the severity of your condition, the age of your children, whether or not you are going it alone as a parent or have a committed spouse or partner, and the degree to which you have people who can help.
1. Ask for help
In whatever way you need it.
If you’re not able to be as physically active with your kids as you’d like to be, ask a friend or family member to take them for a few hours – a trip to the playground, a brisk walk in a local park or nature preserve, a visit to a museum they might like. Or ask them to take your child to a school function or sporting event that you simply aren’t well enough to attend.
Everything is click away now. Need help with grocery shopping? Consider ordering on line.
2. Examine your priorities
Parenting with chronic illness forces you to decide what’s really important and what you can let go of.
Your children, and your relationship with them are your priority. Engage with them in whatever way you can. Listen to them. Share their excitement. Comfort them when they’re struggling.
If you don’t have the energy to be physically active, play a board game or play cards. Watch a movie together. Read to them. Do a simple craft.
If you don’t have the energy to cook a big meal, keep it simple. I’m not sure I’ve ever met a kid that didn’t enjoy a toasted cheese sandwich and a bowl of tomato soup.
The important thing is that you are together, that you preserve family time where you share a meal, some laughter and light conversation.
That room you just cleaned? It’s going to get dirty again. Don’t waste your energy on trying to achieve perfection. Do the best you can when you can. Clean a little at a time. Have your children help with age appropriate tasks.
3. Be honest about how your condition and how you feel
How much you want to share about your condition – and how much you should share – is in part a function of how old your children are. But kids typically know when you’re sick and it’s okay to tell them when you’re having an especially tough day – as well as when you’re having day when you feel pretty good. It will be easier for them to understand why your routine will need to be different. The Mighty, an online community for people facing a variety of health challenges, offers some helpful guidance.
4. Consider counseling
Children often hold their emotions in – or they may express them by externalizing behaviors that aren’t healthy. Talk therapy can be helpful tool for helping your children cope. And of course, therapy for you and your spouse or partner may really helpful, too. One of the advantages of living in a digital age is that you don’t necessarily have to meet with a counselor in person.
5. Take quality time for self-care
Maybe you need some alone time, want to enjoy a quiet dinner with your spouse or partner, or maybe you want to spend some time with a friend and just step away from all of the daily stressors.
I assure you that none of these things is selfish – regardless of whether you’re parenting with chronic illness or are perfectly healthy. Everybody needs to take time for self-care, to go back to the well and to rejuvenate. Your emotional well-being depends on it. If you can’t go out or do anything physical, find a quiet comfortable spot, arrange for some uninterrupted time and focus on your mental wellness.
I may not have been the mom I’d hoped to be. After all, no one wants to be ill during their children’s formative years. But I’m completely okay with the mom I turned out to be – strong, adaptable and resilient. Which, by the way, is exactly how my daughters turned out to be, too.