It’s the one feeling parents with chronic illness struggle with the most: guilt.
Because it hurts when you can’t take your kids to the park or the playground because of your health. Especially when you see the disappointment in their eyes. It hurts when your kids are missing out on experiences because you can’t take them everywhere. Not to mention the guilt you may feel about overburdening your kids with extra responsibilities or worries about your chronic illness.
In theory, guilt is a useful emotion that forces us to contemplate what we’ve done ‘wrong’ and how we can ensure a better outcome next time. But in reality, you can easily develop a negative self-image, depressive feelings or anxiety when the situation you feel guilty about is beyond your control.
No parent with chronic illness wants to miss their daughter’s sports games or son’s school play. We all wish we could pick up our kids from school, go on bike rides and read bedtime stories each night – but that’s not always possible.
So how do you deal with the guilt of parenting with chronic illness?
Honestly, I don’t have all the answers. Ever since my first pregnancy, my health has improved enough for me to keep up with my children’s development so far. So fortunately I don’t experience that much more guilt than mom and dad – healthy or not – feels from time to time.
But here are some thoughts that could help you deal with the guilt of parenting with chronic illness.
How to Deal with the Guilt of Parenting with Chronic Illness
1. Ask yourself these questions:
- Did you do the best you could given the circumstances? Somehow, knowing I’ve done all I could, makes it easier for me to accept that things don’t always work out as planned.
- Did you make the right choice, even if it wasn’t what you’d hoped to do? Earlier this year, my one-year old son was briefly hospitalized – and I didn’t sleep by his side, my husband did. I felt so guilty, cried my eyes out. But after spending days and nights up with him at home, sleeping on a rock-hard couch in a bacteria-filled hospital room would definitely lead to a serious health setback. My mum reminded me that my boy would be asleep most of the time and that his loving dad would take care of him. I knew that in the long run, staying at home (with my daughter) was the better choice, so I pulled myself together and did what I could do: I packed their overnight bag, sat by my son’s side when he fell asleep and made sure I got a good night’s sleep so I could look after him when he got home again.
- How would you judge your best friend when he/she did what you had done? We can be so hard on ourselves. Don’t be your worst critic. Look at your actions without drawing conclusions about your personality or your life.
- Is there anything you can do to get a more desirable outcome next time? Good planning, managing your energy wisely and having a back up plan can be useful tools to get things done with chronic illness. But sometimes, that’s just not enough.
“Guilt is a weight that will crush you whether you deserve it or not.” – Maureen Johnson, Girl at Sea
2. Enhance your problem-solving skills
- Focus on what’s most important to you and your kids. Despite what our modern-day culture suggests, even healthy people can’t do it all. So choose which activities matter the most to you and your family. Your kids may not care about having homemade meals every night, but do look forward to sharing their stories over dinner. You may not be able to drive your children to weekly practices, but you can attend game nights and performances. Set priorities – both practical and emotional – and don’t feel guilty about letting go of other expectations.
- Find solutions for recurring problems. When I asked parents with chronic illness what they struggle with the most, one reader mentioned she hated the days she was too sick to even read her son a bedtime story. Recording her reading his favorite book or buying an audiobook could work for them to still have that ritual on bad days.
- Involve other important people in your kids upbringing. Especially moms think they have to do and be everything for their children, but dads, grandparents, extended family or even your best friend can play a positive role in their lives. Maybe your spouse loves sports and can bring your daughter to swimming lessons. Or perhaps their grandma loves doing crafts with the kids. Like the African saying goes, it takes a village to raise a child, for both chronically ill and healthy parents.
- Build your own rituals. Show your love in ways that are doable for you. There have been times I was so exhausted, we ordered takeaway, had a picnic in front of the television and watched nature documentaries together. What started as an ’emergency measure’ has now become one of my daughter’s favourite family rituals. So develop your own happy traditions that are suitable for your situation.
“Acts born of necessity can become a beautiful new family tradition.”
3. Adjust your mindset
- Put things in perspective. Every parent struggles with guilt from time to time: for working full-time, for not having enough money for their kids to participate in hobbies, for not spending much time together after a divorce. Don’t be so focused on your own limitations and shortcomings that you forget that there’s no such thing as the perfect parent.
- On that note, stay real. Of course you don’t want your kids to hurt, struggle or worry. But you can’t shield them away from reality. And part of their reality is having a mom or dad who has a chronic illness. Life isn’t always easy, and every child will have to learn how to deal with sadness and disappointment.
- See the silver linings. Having a parent with chronic illness can also teach children positive things: how to empathize and care for loved ones or how to accept people for who they really are, with their flaws and imperfections. Even on bad days, you’re an excellent role model for your kids, showing them the power in vulnerability and what it truly means to be resilient.
- Remind yourself that wallowing in guilt doesn’t get you – or your family – anywhere. Feel the emotion without judging yourself, learn what you can from the experience and then let your guilt go.
I’d love to hear from you: how do you deal with the guilt of parenting with chronic illness? Which mindset or problem-solving actions help you move past the sadness and disappointment?
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