Chronic Illness Support: How to Parent Your Child with Medical Illness
Launching Your Daughter Podcast
Managing Chronic Pain in Families – Episode 47
When becoming a parent the last thing that comes to mind is the possibility that your child will develop a chronic illness. When chronic illness affects your child, the impact it can have on the whole family is significant. Of course the child is not the only one who is affected but the parents and siblings are experiencing it too. They see the changes in behavior taking place and see that the child is hurting and in pain. All of these changes can make the experience hard on parents to witness.
Why is it so hard?
Because the parent and other family members are seeing the child’s health decline and the grown-ups feel powerless in helping make things better.
Parents want to make life comfortable for their child so when chronic illness suddenly strikes, it sets off the parent panic button where the worry and fear can easily spiral out of control.
So what is a parent to do?
First off, even though it is easy to get rattled and upset by what is happening to your child, it is really important to check your anxiety at the door.
When in the presence of your child, try to keep your interactions with them consistent. Consistent meaning being a calm, comforting a stable presence. Feeding into the fear of “How am I going to help my child?” can quickly spread like wildfire and make the child feel anxious and fearful too.
Your child is probably confused by what is going on with their health and they are feeling sad, angry and frustrated because they do not understand what is going on. They may act out, become more reserved and might have difficulty connecting with their peers. Suddenly the child’s daily routine has been altered and in many ways they feel forced to make changes against their will.
Giving your child a safe space to feel what they feel about their chronic illness is important
This is where the parent comes in. While your child is adjusting and going through a roller coaster of emotions, it is a your job to be a stable and grounding presence. Being calm and comforting toward your child will allow them to freak out and share their feelings with you about their chronic illness. Giving your child this space to talk and feel safe to share their emotions lets them know that it is okay to talk about difficult experiences with their parents.
How can I as the parent check my emotions at the door? This is just not realistic.
Yes I absolutely agree with you on this one because after all, you are a human being with feelings and emotions. If it normal and expected for you to feel sad, angry and upset about what is going on. Parents want the best for their children and chronic illness coming into the picture causes parents distress about how this illness will impact their child’s quality of life and future.
Finding a space to share how you feel as the parent
So yes as parent it is equally as important for you to express how you feel. The key though is processing these feelings when in the presence of other adults where you can let your guard down and be vulnerable when talking about your fears and concerns. That setting might take place with a therapist, a support group, or over coffee with a close friend. Maybe the date nights you have with your partner works best in getting these feelings out. The main takeaway here is that by getting out all of these feelings when talking to other adults, you are taking care of your own emotional needs.
Talk to your child about their chronic illness when appropriate
Having conversations with your child about their health is important to help clear up any questions they may have. It is always good to remember to keep the conversation at an age appropriate level. Keeping things simple and to the point will help your child better understand what is going on so that they feel less anxious about their chronic illness. Too much information on the other hand, can be overwhelming and stressful.
Parent Self-Care is Just as Important
By taking care of your needs you allow yourself to be more emotionally available to have quality time with your child where you are fully present and available to them. Those moments of greater connection with your child lets the child know that they can talk to you about good times and challenging moments whenever the need arises.
Getting all those feeling out as the parent is important for your own self-care. Doing this helps parents to be more available emotionally for their child when their child needs them most.
The other benefit is that this gives your child the message that it is okay for them to set time aside to take care of their own needs. Them seeing you model this behavior will make it easier for them to set up a plan or system of their own to take care of what they need too to feel better emotionally and physically.
What might that self-care system look like for your child?
The age of your child will play a part in how this planning takes shape. Older children might come up with these ideas on their own while younger children may need a little help from their parents. Children may come up with a favorite stuffed animal, a blanket, or a picture that comforts them. They might also have a favorite movie, tv show, arts and crafts project or cooking activity they like to get involved in to keep their mind occupied and engaged in something that excites them and brings them joy.
Change in Focus and Thought Patterns
It is easy for parents and children adjusting to medial illness to focus on what is going wrong more than what is going right. Making an effort to bring awareness to the helpful ways both parent and child are coping is a powerful approach in boosting the child’s self esteem. It sends them the message that they do have a say in how they live their life with this illness which is both an empowering and healing message.
Even though the parent and child do not have complete control over what is going on, the child is being taught that there are things they can do to feel better and feel more control over their situation.
Additionally, the child is taught that they are not a victim to their circumstances and that they are not alone in this journey even though they may feel that way sometimes.
Creating a System of Support
Helping your child come up with ways to feel supported so that they know who to reach out to when in different settings also is important. What can your child do when they are feeling unwell at school or if they are at a friend’s house? Setting up systems for these types of situations will help them to feel more calm and less anxious because they now have a plan to fall back on.
Being a calm and stable presence for your child and also helping them develop a plan are all important steps to getting your child more calm physically and emotionally.
This is a really important way to get the nervous system more settled. When this happens, the body is more able to access its natural healing resources. Helping your child get into a place of feeling better is the ultimate goal. Perhaps reminding yourself of this can be a great way to stay on track in how best to support your child’s chronic illness.
Sadly there is no guarantee that your child will fully recover from their medical illness. But by taking these steps, you are giving them the best chance possible toward recovery. You as the parent are doing all that you can to teach them and role model how to cope with their illness no matter what lies ahead. Chronic illness does not need to take over your life. There is hope and your child can navigate this experience with your help, guidance and support.
To Learn More…
You can listen to this interview where I talk about ways parents can support their children who are experiencing chronic illness.
If you or someone you know is having a hard time managing their chronic illness, or are feeling overwhelmed with life transitions please contact me to see how I can help. If you live outside of California I would be happy to connect you with therapists in your area.