Inside: Parenting is tough. Parenting while living with chronic illness is even tougher. Studies show that around 10 percent of children grow up with a parent with chronic illness. Read on to find the best tips for managing stress and parenting with chronic illness.
Has parenting with a chronic illness ever left you wondering how you would get through the day?
You’re not the only one.
As a mom living with a rare, neurological disease, I know firsthand how devastating it can be parenting while living with chronic illness. Every task and activity takes me longer – if I’m even able to do it at all – and leaves me so weak that I need constant breaks throughout the day.
Being a stay-at-home mom and trying to incorporate living with chronic illness as normally as possible into my family’s life means finding coping strategies that help deal with the constant challenges.
Leading up to the birth of my first child, I searched online for resources regarding parenting with a chronic illness and found little data and information. Since then, I’ve dedicated myself to providing resources for others who are parenting and living with chronic illness.
The information listed below is what I found through research and through my real life experiences.
1. Be Honest
Be honest and transparent with your children about what’s happening with your chronic illness. Kids are incredibly perceptive and, while it may seem like you’re saving them from unnecessary sadness, telling a white lie can lead to anxiety and mistrust.
You don’t need to go into detail, depending on the age, but refrain from telling them that “Mommy is going on vacation” and instead say something like “Mommy is going to the hospital, so the doctors can try and make her feel better.”
Furthermore, when it comes to parenting and living with chronic illness, it’s important to explain to your child that you’re different from other parents and why. It may confuse them that you’re not able to participate in the same activities as other parents, so be sure to explain in terms they can understand that you have an illness that causes XYZ, and limits your ability to do certain tasks. Be patient, expect questions and reaffirm that the illness isn’t contagious.
While it’s tempting to try and save your children from sadness and confusion, they’ll ultimately appreciate the transparency and find ways to cope with their emotions without feeling disconnected from you.
2. Stick to a Consistent Routine
For parents living with chronic illness, I cannot stress enough the importance of sticking to a consistent routine.
Depending on the type of illness that you have, this may not always be possible, but trying to maintain a normal schedule will help prevent stress on the family and help your children feel more secure.
Children crave routine. They need structure and predictability. When dealing with the stress that comes from having a parent living with chronic illness, they need to feel calm in their environment and trust that their parents have things under control as much as possible.
Benefits of Sticking to a Routine:
- Adhering to a consistent routine helps expose children to healthy habits.
- It helps establish independence in children.
- It creates a calmer household.
- It helps alleviate the power struggles between the parents and the child.
According to Melbourne Child Psychology, “In what some researchers have described as an ‘epidemic of anxiety’, the predictability and familiarity that comes with routine offers the perfect ‘safe space’ that kids need.” Additionally, emphasizing the importance of sticking to a routine can help children who internalize their feelings of guilt. By showing them that life must continue despite your illness, you demonstrate that it’s OK for them to continue forward in their lives without feeling guilty for not being with you 24/7.
3. Ask for Help
I know it’s hard to ask for help. As an incredibly independent person, I’ve had to let go of my preconceived notions on what it means to ask for help and learn to accept it – something I still struggle with today.
When my mother-in-law first mentioned getting additional help, I immediately rejected the idea and was insistent on raising Asher myself. To me, having a nanny, especially while being a stay-at-home mom, felt like a failure. It wasn’t until he was born that I realized I had to do what’s best for him, which meant having someone around at all times who could immediately tend to his needs.
As my strength weakens, it’s hard to watch as the tasks I’m able to do independently decrease one-by-one. I have to do what’s best for my child though and oftentimes that means letting go of my ego and watching someone else partake in the activities that I so desperately want to be a part of.
4. Accept What You Can’t Change
You may not want to hear this, but, at a certain point, you have to accept what you can’t change.
No one deserves to live with the misery of parenting and living with chronic illness, but whether fair or not, it’s up to you to choose how you deal with it.
You can wallow in self pity or accept what has happened in your life and dedicate what you still have to showing your kids strength and positivity. Of course, you’re still allowed to be mad, sad and anxious – and, please by all means – cry it out, but you’re not allowed to take these emotions out on your children and revert to playing the victim.
So, whether or not you want to hear this, you may need to hear this: Suck it up. Accept it. & Move on.
5. Focus on Your Strengths
For parents living with chronic illness, it’s important to focus on your strengths rather than your limitations. Identifying your unique set of strengths will empower you to feel confident with your children and reduce the chances of spiraling down a hole of negative thoughts.
For instance, maybe you are unable to go outside and play, so you could offer indoor activities such as coloring or watching a movie.
Research suggests that practicing dispositional gratitude, that is focusing on the positives in life, can lead to happier children for parents living with chronic illness.
There will be times when no options seem available and that’s OK. It’s important to let your child know they’re heard and that you want to be with them in whatever capacity you can. On days that you’re unable to get out of bed, let your child play next to you for little spurts frequently throughout the day. Try to remain as positive and let them know that you will make it up to them as soon as you start feeling better.
6. Practice Patience
When the physical demands of raising children are just outside your reach, it can be hard coping with the challenges of parenting and living with chronic illness.
Sometimes, we become impatient and reach a breaking point where we act out in a way that we’re not proud of. When this happens, it’s important for us to acknowledge our actions and apologize, as well as identify our triggers.
Why Patience is Important:
- Children learn through imitation by modeling their parents behavior, so the more patience you show, the more patience your child will have.
- Patience instills confidence in children by feeling like they’re trusted to handle tasks rather than having the parents rush to solve a problem.
- Patience establishes authority. If you’re getting upset over every little thing, your child will never know the difference in their bad behaviors. Saving your patience for times when your child has truly acted out of line will help communicate the consequences of their actions.
According to Carla Naumburg, author of How to Stop Losing Your Sh*t With Your Kids, “Patience is vital because it’s part of creating a deep, meaningful connection with our kids. Having a warm, flexible, responsive connection to our children is fundamental to virtually every aspect of parenting.”
While parenting with a chronic illness comes with many obstacles that will challenge your patience, it’s important to remain as calm as possible for the sake of your child’s development. It may feel good in the moment to release your frustration, but, more than likely, you’ll immediately regret it and have to apologize later.
Keep things in perspective and when you notice yourself becoming triggered, take a deep breath and think if it’s really worth getting upset over.
7. Be Observant
It’s important to be aware of how your child is processing their emotions, since children internalize the difficult emotions that come from having a parent living with chronic illness in a variety of ways. Always validate the emotion your child is feeling and let them know it’s OK to feel this way.
How to Help your Child Through Difficult Emotions:
- Listen and watch how your child expresses emotion in a non-judgemental way without interrupting.
- Label the emotion that your child is experiencing by saying something like, “I see that cancelling our plans to go see a movie has made you angry.”
- Suggest appropriate coping mechanisms such as offering them to draw how they feel on a sheet of paper.
- Always model appropriate emotional expression.
If your child is exhibiting maladaptive coping strategies and you’re worried about signs of depression, it’s important to get help. Talk to your pediatrician about options, as they may recommend therapy or some other form of help.
Final Thoughts on Tips for Parenting with a Chronic Illness
Parenting is hard and parenting and living with chronic illness is even harder. If there’s anything that I can offer you, it’s to know that you’re not alone in this. On days when it feels like nothing can go right, remember there are others just like you struggling.
The tips listed above will help navigate you through parenting with a chronic illness, but remember that every child is different and will respond in different ways. It’s important to try and keep a healthy perspective, and, lastly, show yourself some sympathy.
Are you a parent struggling with chronic illness? How are you coping? Comment below and share the best tips that you’ve found for parents living with chronic illness!
Allie Schmidt is a rare disease advocate and disabled mom living with motor neuron disease. She founded Disability Dame in 2020 to provide tips to other moms living with disabilities and chronic illnesses.
In her spare time, you can find her traveling with her husband (she's been to 38 states and 16 countries!), watching reruns of Survivor, or tending to her near-constant sunburn from spending too much time outside. You can follow her adventures here.