Teaching Your Child About Your Chronic Illness

Dear fellow parents living with chronic illness that cause chronic pain and fatigue:

My daughter was 10 when my illness began and by the time she was 11 years old our “on the go” lifestyle had started to change. The more it changed, the more I had tremendous guilt overpower me, thinking I was failing as a parent because I could no longer take her to do things as we did before. Little did I know then, she understood!

At 18, she writes me me a letter saying I’m the strongest person she knows and I am the best mom in the world for always being there, supporting her decisions and letting her make mistakes. She tells me being a good mom is a choice and I chose to be the best mom in the world. She probably has no clue how much those words mean when I worry I failed her by way of the pain, fatigue and lost abilities that has affected both of our lives.

You know your child best. You know what they’re going to understand and the best way to explain it. You have your personal morals and feelings that guide you on what and how to best talk with your child.

No matter the age of your child, I feel it’s important to be honest. Honesty is required in any relationship, and certainly with your child as they need to be able to have trust in you. Plus, we teach them to be honest from a very young age and expect it from them the older they become. Of course your language is going to vary based on their age, and you can keep it simple, such as, “mommy’s back has owies so I need to lay down while we play.”

 

Teaching your children about your chronic illness and why your daily life is different, should be an ongoing conversation, not a sit down conversation here and there. Having short conversations when and where your child talks most and listens best works well because they will actively listen, hopefully ask questions and we all know our child’s attention span. For my daughter it has always been in the car, eating dinner or on an outing together. I never wanted to overwhelm her with information all at once, and certainly didn’t want to scare her or make her worry. I kept all of our talks upbeat and fairly short and sweet. Although they evolved as she got older.

My ankylosing spondylitis was triggered after a year of colitis that also caused back pain — so our first conversations were about my trips to the bathroom, tests and doctor appointments. I told her when I went to my first appointment and any important follow-ups with more information on why I hurt and was so tired. I explained it all in age appropriate terms and kept it simple, such as, “They’re checking my belly to figure out why I go to the bathroom so much.” As she got older, our conversations grew deeper. I could explain what ankylosing was and why it causes the pain she recognizes I’m in. I definitely can’t hide it, but my smile let’s her know I’m fine.

As you teach and update your child when you can’t physically do something or go somewhere, ask how they feel. Ask if they have any questions. If you tell them something new, ask then, but continue to ask periodically over time. When they’re younger, they might feel upset they couldn’t go somewhere and it hurts to hear them say they’re upset, but validate their feelings because you’re likely upset too.

The hardest part might be dealing with your own guilt. Whether your illness was present before they were born, or your onset was later in their life, you might feel guilty. You might feel like you’re failing them in some way because of your physical limitations. This is normal, but you have to know that being the best parent you can be doesn’t include what you physically can or can’t do. If they’ve grown up with your altered abilities, they know nothing else. If onset came later, they adapt and understand. This is also where the, “It takes a village to raise a child” has more meaning than ever. Use your resources to take them to places for you. Let them have play-dates with friends. When they’re old enough, let them go with family or with a friend on a family outing or trip. What they need from you is unconditional love. Knowing you are always there when they need you and to know you support them. It starts out the day they’re born, with cuddles, soothing their cry and your loving words spoken, well before they can talk back. That love and your relationship grows every day, nothing gets in the way.

Teaching my daughter about my illness was a slow, ongoing process. We’ve had an ongoing discussion for over eight years now, including over the past month as I’m experiencing a change in the severity of my pain. She’s understanding beyond words and has fully accepted my limitations.

I believe you will find the words as time goes on, continuing to battle your illness as the amazing parent you are and always will be!

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