It is every parent’s worst nightmare when their child is diagnosed with a chronic illness. Life changes in an instant and becomes centred around medical appointments, procedures, managing daily life and trying to give your child the best quality of life possible as they come to terms with an impactful diagnosis.

For the child themselves, this can be an extremely stressful and confusing time as they adapt to significant changes in their life and their health. It may be no surprise that children who have chronic health conditions are at an increased risk of developing psychological difficulties, as are their families and caregivers.

Some risk factors for psychological issues include:

1. How much pain the condition causes,
2. How visible the illness is,
3. How much the illness impacts daily life,
4. Any cognitive difficulties experienced.

During the process of being diagnosed, and immediately after, the focus is typically on treatment options, appointments, and potentially lifestyle changes. While this is completely normal, we often forget the mental component to any illness, regardless of age. Children may be sitting in appointments with adults talking over them, making decisions for them and feel a complete loss of control over their body and what is happening to them.

What to look out for in your child after a new diagnosis:

1. Withdrawal from friends, family or activities they previously enjoyed,
2. School refusal or not participating in the same way at school,
3. Emotional outbursts that seem disproportionate to the situation, or out of character for them,
4. Difficulty or resistance in getting them to participate in appointments or make necessary lifestyle changes,
5. Changes to sleep patterns,
6. Changes to eating patterns,
7. Anxious or racing thoughts,
8. Becoming self-conscious (particularly if their illness is “visible” in any way),
9. Becoming more fearful of other things happening, for example, getting another illness, getting into an accident, losing someone, fearing death,
10. Ruminating on things that happened at the hospital, or mentioning vivid “flashbacks” and struggling to move beyond procedures or experiences in the hospital.

You may also notice some of these signs in their siblings or other family members as you all adjust to this big shift in your life.

Some tips for supporting your child through a chronic illness:

1. Have age appropriate conversations:
   It’s important to have conversations that are age appropriate with your child around their illness. Depending on where they are developmentally it can be helpful to use pictures as a way of helping them understand what is happening in their body. For some children it might be helpful to fill in a body outline that can be used as a reference point to discuss from. When our son was diagnosed with a chronic illness, his specialist at the hospital provided us with a drawing of him that showed him exactly what was happening in his body and where. I have placed an example below:

1. Be mindful of “concrete” thinking in children:
   Depending on where your child is in their development, they may not fully understand certain things, or may think “concretely” about the things going on. For example, if you have told your child they are having a surgery to “make them feel better” and they wake up feeling terrible post surgery (due to anaesthesia and recovery) they may feel confused as they believed they would wake up feeling instantly better.
2. Don’t make assumptions:
   When we went through this as a family, we tried to make sure that care providers spoke directly to our son. As his caregivers, we knew his cognitive abilities and we wanted him to feel as in control as he possibly could, but we would find ourselves and certain doctors or nurses assuming that he would not understand what was going on, or that he would not have an opinion or questions to share. Don’t be afraid to seek clarification from your child and encourage healthcare providers to do the same. Let your child know that they are in control and can speak up at any point. No one should assume that just because they’re a child they don’t understand.
3. Be flexible and creative:
   During this process, we were told our son may need a feeding tube. This was 2 weeks before Christmas and our son was immediately thinking about all of the Christmas treats and traditions he would miss out on. As a family we decided that we would not celebrate Christmas until his feeding tube was removed and we told him that he would be able to help plan an extra epic Christmas when he could fully participate! If you are unable to take that vacation, or they are unable to participate in sports etc due to their illness or treatment, try to find creative ways to still enjoy life! Get them involved and get them excited! This will also help them manage disappointment or difficulties into their adult life if they believe they have the creativity to pivot and make the best of their current situation.
4. Don’t be afraid to seek professional help:
   We definitely don’t need to wait for psychological issues to start to involve a trained mental health professional on this journey. Having someone with expertise in chronic illness can be a huge asset to the child and the caregivers as you all adapt to this new “normal”. Oftentimes, children will know that their caregivers are struggling emotionally with what is happening and they may hold back on sharing some of their feelings in order to protect us. This is not to say you can’t be sad around your child, or have your own struggles or emotions, but for the child to have a space that is theirs and only theirs can be very powerful as they heal emotionally from the toll the illness has taken on them.

Some tips for parents/caregivers:

1. Try to remain in the moment:
   It can be very easy to think really far ahead and to spiral at how truly overwhelming the unknown is. I found it helpful, especially in those initial days/weeks to take things one day at a time, one appointment at a time. I personally have a tendency to get very anxious and want to know exactly what is going to happen, and that’s not always possible in those early days, so finding ways to manage things in manageable chunks will help alleviate some of the anxiety from going “too far down the rabbit hole!”

1. Learn to let go of certain things:
   It’s ok if the laundry doesn’t get done right away, or if there are dishes, or your house needs to be cleaned. If you can bring in people to support you with these tasks, then you should! If not, try to be gentle with yourselves and remind yourself that this isn’t forever.
2. Check in with yourself:
   It’s completely natural to focus all your energy on your sick child, but try to find times where you think about yourself. Have you eaten today? Have you showered? Are you feeling tired? Stressed? Anxious? If you have a trusted person you can share these things with, reach out. I found it important for my husband and I to check in with each other too. Even if there is nothing we could do in the moment to help one another, it was comforting to be able to share.
3. Learn to say no and set boundaries:
   If you are responsible for a lot of people, or you have a demanding career and are used to saying yes to help anyone, this is the time to reframe that. It’s not selfish to set boundaries around your other roles and responsibilities. Be honest with those around you about what it is you need and don’t be afraid to be firm and clear about what you can handle as you care for your child.
4. Open and honest communication:
   We found this was especially important with our other children. We wanted them to understand exactly what was going on so that they didn’t worry unnecessarily, and also so they could understand why life looked a little different. Our other children are 9 years apart in age, so the way this was communicated to them both was different and in a way that matched their development. They have both been great at supporting their brother and understanding of why we have had to shift and adapt as a family. This can also be helpful for extended family and friends. People will want to support you, but need to know what you need and what to expect, then they can truly show up for you in a way that is helpful.

I hope you found this blog to be helpful. As always, if you are interested in learning more about our services and how we can support you, give us a call at 519.302.2300 or email reception@brantmentalhealth.com. Our amazing admin team will take the time to understand your unique situation and will provide you with options for you and your loved ones. Remember, you are just one person and to be as gentle with yourself as possible.