Parental Advice For Helping A Child Cope With A Chronic Illness

One of the hardest things to do as a parent is to witness your child struggle with health issues – especially ones with no cure. Even though you can’t control what’s happening to them, here are ways to start helping a child cope with a chronic illness.

#1.Take care of yourself

As a parent it comes naturally to consider yourself last sometimes, especially when your child is ill.The focus mainly becomes making sure your child eats, gets medical care and is recovering. It almost seems like you get tunnel vision and are on autopilot focusing on making sure they have all they need. Here’s the big question… How often do you consider that for yourself?

Health providers emphasize how important it is for parents to take care of yourself physically, mentally and emotionally while you care for the needs of your chronically ill child, because you are better able to care for them when you do the same for yourself. Check in with yourself daily to see what you need and make a plan to meet your needs. 

Here are a few things some parents find they need: 

1. A nap
2. Schedule your own medical appointment
3. Grab lunch with a friend
4. Get help with cooking meals or cleaning the house
5. Support with your other children 
6. Scheduled time with your partner
7. Time to cry
8. Read a book
9. Time to run errands

Each of these needs are valid, and you are likely to fill your cup with more energy and joy when allowing yourself to do them. If you notice that you are struggling to take care of yourself as you care for your child, please know that it isn’t a character flaw…

It’s freaking hard!

Allow yourself to ask for help from others in your family and community that you trust. It goes a long way.

#2. Talk About What’s Happening

Many parents avoid talking about their child’s chronic illness because they are worried about scaring them. However, avoiding the elephant in the room only makes them worry more.

Openly talking about their health condition is a key way of helping a child cope with a chronic illness. This shows your child that their health is not a “big bad secret” and gives them the opportunity to share how they feel. These conversations help them to feel more supported and informed about what’s happening with their health. 

Here are some tips that can help you talk about your child’s chronic illness.

3. Listen to Them

I have had countless parents tell me that they were surprised once their children shared how they were feeling about their health. They often felt surprised because their child “didn’t look sick” or they thought they “just had growing pains.” If this sounds like conversations you’ve had with your child, don’t beat yourself up. 

Chronic illness symptoms can often mimic other things, and you can’t expect yourself to know all things medical health with your child. In this case with their chronic illness, it is important to listen when your child says how they feel.

If they say they feel tired or achy, take them at their word and consider how you can support them through that. This response helps them know that 1) it’s okay to not be okay, 2) their feelings are valid and 3) they can get help when talking about their feelings.

Here are some signs that your teen is struggling with their chronic illness.

4. Make a Plan to Cope with Symptoms and Emotions

Your child is likely to feel some big feelings (i.e., disappointment, sadness, anger and helplessness) on their journey with a chronic illness. Those feelings may not be because “they are just being kids,” but instead could be because their health condition is making things more difficult for them to be kids (i.e., missing out on sleepovers/birthday parties, difficulties participating in sports events, challenges keeping up with schoolwork or less time with friends). 

A key way to helping a child cope with a chronic illness is to make a plan that you both can follow if certain health symptoms or feelings come up. Having a plan decreases anxiety and increases confidence for you and your chronically ill child.

Make a list of all chronic illness symptoms (physical and emotional) that they are likely to experience and then write down how you (and your child) will cope in different situations (i.e., home and school). Remind your child to use these skills (even with your help) when you notice they are having a difficult time.

If you are unsure of where to start with making an emotional coping plan, here is more on how to keep your mood steady with a chronic illness.

Also speaking with your medical professional and a chronic illness therapist can give you both more support.

5. Learn About Their Chronic Illness Together

The stress that comes with a chronic illness diagnosis can be overwhelming at times because there is so much to learn and many unknowns. You may find yourself researching everything there is to know about your child’s illness in an effort to help them cope with it. Great! 

At the same time, it’s also important for your child to learn about their chronic illness, because it helps them learn how to meet their needs. 

The way that you inform them may be different based on their age, but your child needs to know how their body functions and how to support it. They may have questions about why they can or cannot do certain things like other kids their age, and it’s helpful for them to know those answers. Your child can still live a meaningful life with a chronic illness, and this information helps them learn how to do that. 

Ways to inform your child about their health condition:

1. Handouts or books about their chronic illness
2. Educational videos 
3. Supporting them in asking questions at medical appointments
4. Participation in support groups for other kids with their chronic illness

Here is a full list of books and podcasts that focus on life with a chronic illness.

6. Be Their Biggest Advocate

As a chronic illness therapist I have been told daily about instances where others have felt unheard, dismissed, ignored and alone because other people assumed the worst in them or didn’t consider how they felt. They all expressed how important it was for them to have someone in their corner who believed in them and took their needs seriously.

Your child needs you to unapologetically advocate for their needs. Give yourself some grace here, because you are already advocating for your child by reading this article. Great job! 

Here are some other ways to help your child cope with a chronic illness:

1. Correct or inform people when they misunderstand or minimize their health issues
2. Request 504 or IEP accommodations as needed in school
3. Request a second opinion with medical professionals if you disagree with their suggestions 
4. Communicate your child’s health and emotional needs with school professionals
5. Enroll them in therapy services for emotional support

7. Create a Supportive Community

Lastly, one of the most important parts of helping a child cope with a chronic illness is to intentionally surround them with people that “get it.” These people understand them and provide support at different levels (family, social, medical, school, etc.).

You may notice that your inner circle gets a little smaller as you make this a priority, because some people are not supportive despite you informing them of what’s going on – and that’s okay. It’s best that they are surrounded by a smaller number of supportive people than many people who don’t.

Connecting your child with other chronically ill children can help them cope with their feelings and openly talk with others with similar experiences. Check with your child’s doctor or therapist to see if any support groups are offered in your area.  I also offer skills-based support groups for chronically ill teens across state lines. 

Also, consider joining your own support group for parents of chronically ill children in your area.

Next Steps for Chronic Illness Support

I’m Alicia Dorn – a Chronic Illness Therapist. I help teens, adults and their families manage the emotional toll that living with a chronic illness can bring. Therapy is a powerful tool that can help your child cope with a  chronic illness in a safe space.

Although the journey with a chronic illness is hard, therapy can make it more bearable by helping you talk through the hard conversations about your health, increasing your confidence, relieving your stress and talking with someone who understands what the journey is like.  

You can schedule your first appointment with me by booking a free 15-minute consultation call.