Any parent can tell you that taking care of a child is difficult at times. There are all kinds of special circumstances that can test parents, such as becoming parents for the first time and figuring out how to feed, or learning how to balance the needs of multiple children. However, parenting a child with chronic illness has its own set of unique challenges, especially since everyone’s journey with chronic illness is different.
Some parents of chronically ill children have illnesses themselves, which is yet another consideration amidst everything else. It can be difficult for parents to make time for themselves when devoting so much energy to their child. However, neglecting one’s own needs can lead to exhaustion, burnout, and exacerbation of physical symptoms.
As a chronic illness counsellor in Vancouver, I want to assure you that it is possible to find balance, peace and joy when parenting a child with chronic illness. I have firsthand experience in seeing how parents of chronically ill children can thrive in the face of hardship. Read on for my suggestions.
3 Tips For Parents of Chronically Ill Children
Every family’s experience with chronic illness is different. Take the suggestions that resonate with you and leave the rest–you know yourself and your child best.
1. Validate your child’s feelings
It’s natural to get caught up in the challenges of parenting a child with chronic illness. There is so much added responsibility: managing medication and medical appointments, enforcing your child’s treatment plan, and generally doing all you can to make your child as comfortable as possible.
While it’s understandable to devote your energy to making things better for your child, it’s also important to acknowledge your child’s current experience. For example, a chronically ill child might get upset that they can’t participate in all of the same activities that their healthy friends can. A child awaiting an organ transplant might feel frustrated that they need to take extra precautions to protect their immune system, which may involve missing out on large gatherings.
It might be tempting to remind them of what they can do–which is helpful in its own right–and validating their feelings is important as well. Saying something like, “It is a bummer that your asthma makes running hard” or “It’s okay to be sad about missing out on group activities” can help your child feel seen.
Words though are sometimes not enough to feel seen. That is why I would encourage you to turn towards your child, get on their level (literally kneel if you have to) and look them in the eyes to show them you are there with them. Ask yourself: “Can they see me seeing them?”. If you get a zing of attunement or deeper connection with your child in that moment, then you know they’ve felt seen.
When you show up and validate your child’s feelings, not only are you demonstrating to them that you’ve listened, but you show them that you care about their experience, that they are important and are not invisible. In a world that inappropriately values ableism, being seen and heard when living with a chronic illness keeps us connected to a sense of belonging.
2. Empower your child
If you live with a chronic illness you know that it can leave you feeling powerless. It might feel like the illness dictates your family’s life, especially with how unpredictable flare-ups and symptoms can be. Even with the most careful planning, managing your child’s health requires an immense amount of patience and flexibility–as you likely know firsthand from parenting a child with chronic illness.
This makes it all the more important to give your child decision-making power whenever possible. There will be plenty of times when decisions will need to be made for them: either by you as their parent, or by the demands of the illness itself.
Allowing your chronically ill child to take charge of small decisions (think: choosing which board game to play at family game night, colours for coding their medication schedule, or which restaurant to eat at) can help them feel empowered. While it won’t change the impact that chronic illness has on their life, it can still feel good for them to have control wherever and whenever possible.
3. Build and utilize your support system
Parents of chronically ill children can often feel alone. It might feel like other parents you know just don’t understand what your family is going through, making it difficult to connect with them.
Having a chronically ill child can be an isolating experience, but you don’t have to do it alone. Your medical team is an important part of your support system, and just as vital are your allied health care (e.g., Occupational Therapist, School Counsellor, Behavioural Therapists) and social teams. There are many different ways to find connection, such as in-person or online support groups, virtual platforms, and even therapy.
I provide counselling in Vancouver, and I support families as they manage chronic illness–whether it’s their own condition or that of a family member. I make space to process it all: the sad parts, the scary parts, the frustrating parts, and especially the joys and successes. My goal is to make you feel heard and supported in the ways you need.
Special Considerations For Parenting With A Chronic Illness
Parents of chronically ill children may have health issues themselves. Managing one’s own health condition is difficult, as is supporting a chronically ill child. However, having these two experiences simultaneously can create unique dynamics.
If you are someone living with a chronic health condition you likely know the energy it takes to balance your own needs with your child’s. Sometimes your needs will conflict with your child’s, and that can be especially difficult. Being able to acknowledge that you too need to be cared for is a powerful move in considering the health and wellness of your whole family. These are good opportunities to call upon your support system for help. You shouldn’t have to navigate this journey alone.
When parenting with a chronic illness, it’s especially important to remember that no one is perfect-because perfect doesn't exist. You’re bound to feel worn down at times and wish you’d been able to manage certain situations differently. Learn ways that you can talk to your child about your chronic illness-because you too deserve kindness and compassion. You’re doing the best you can, and that looks different from day to day.
You also deserve to put your own needs first at times. This can feel hard to do because of some potential internal battle of ‘shoulds’ and the subsequent guilt trip effect. However, all parents deserve rest, and it’s especially important if you are parenting with a chronic illness. As the saying goes: you can’t build a house on a poor foundation!
Modelling healthy behaviours of setting boundaries and attending to your own needs sets a positive example for your child as well. Plus, you can use your shared experience of chronic illness as a way to empathize and connect with your child. While the journey is tough at times, you and your child are in it together.
You Deserve Support When Caring For A Chronically Ill Child
Parenting a child with chronic illness can be an emotional journey. There are high highs, low lows, and everything in between. This is especially true if you have the experience of parenting with a chronic illness yourself.
I provide folks like you with an outlet to process life with chronic illness. I strive to create a safe, open space where you have the opportunity to focus on yourself while feeling empowered and supported.
If you’re ready to talk about your unique experience parenting a child with chronic illness, I’m ready to listen. Reach out today to schedule a consultation.
Stay Strong,
Myriame