How Much Should We Tell Our Kids About Our Illnesses?

This is complicated… so complicated. It of course varies with every family, because every family has their own personalities and needs. I am by no means an expert on this except that I have been living it for what feels like my children’s entire childhood, especially the last six months. How do you keep your children happy, balanced and thriving and experience a “normal” life when a parent has a severe illness? Do you tell them the truth or do you try to hide it from them? I can’t tell you what to do with your family, but I can share what I have done with mine.

I am a huge believer in honesty with my children. I remember the day that I found out Santa Claus was not real and I was devastated — not because he didn’t exist, but because I felt betrayed that my parents “lied” to me all those years. I was obviously a dramatic child, but it instilled in me that my children deserve honesty from me. Now that I’m an adult and have children of my own, I understand that “honesty” is a spectrum and being completely truthful at all times is not always appropriate. My kids do believe in Santa (my husband was adamant about that), but we are as candid with the children as possible about my Lyme disease.

One thing I have learned from being a mother, and a doctor that loves pediatrics, is that children sense tension and they listen to everything. The children always know when something is not right, and sometimes they internalize that, which can lead to emotional disturbances and physical conditions like stomach pain and headaches. We could try to hide that Mommy is so sick, but no matter what they would know that something is not right and Mommy fluctuates from being right there with them to being in bed all day and making them be quiet. To make things more complicated, my children inherited my disease from me, and while they are not as sick as I am, they are symptomatic. If we tried to hide my disease (even though it is so severe at this point), it denies them the empathy and understanding for what they are going through. So for us, hiding my chronic illness was not an option. 

When things got severe, and it was at a dangerous level, we even had to teach them how to dial 911 and talk to them about if Mommy passes out. What a talk that is with a 6-year-old and 4-yearolds (now 7 and 5). They learned about Mommy’s sensitivity to sound, and when she has a panic attack and yells it is not about them, it is about Mommy’s illness. They learned that Mommy has organ damage and that it requires a lot of medical care to get well. They learned that sometimes Mommy has to be in bed for a day to sometimes days.

You would think this is too much for little people to process, but an amazing thing happened. My children are so compassionate and empathetic that this process developed that even deeper. Educating them to what is happening reduced their fear of it and it instilled a desire to help as much as they could for me to get better. They check on me often, refill water glasses for me, and help massage my shoulders. In short, they learned to care for others and speak up for themselves when they need help.

But the flip side is that we don’t want our illness to take away from their childhood. Our solution? Balance fun activities, normal activities (school, cub scouts) with education — teach them not just about the disease but also about the treatment and solutions to the disease. They understand that Mommy has to take a lot of medication and rest a lot. One time I went into a full rage (when inflammation hits my medulla oblongata or basal ganglia I cannot control extreme anger to minor situations) toward my son — my sweet little boy. When the inflammation calmed and I regained my senses I was devastated and apologized. That sweet little man put his hand on my arm and said, “I know Momma, that wasn’t you, that was the Lyme.” How amazing is that.

My husband and my mother have really stepped in to make my children’s lives incredible. We do lots of little outings. Exploring the lake and beach, learning to swim, teaching my son Liam to ride his bike, searching for frogs and gardner snakes in the yard, getting hot cocoa at the coffee shop, library trips, and of course the coupe de grate — kittens for the twins’ birthday. It takes a village to balance this, and I could not do it without my mother and husband supporting my disabilities and maintaining normalcy for the kids.

I know a lot of you with chronic illness do not have a support group, and this sounds insurmountable. Previously I was living where we did not have family close enough to provide daily assistance. We had friends, but it was too much to ask for daily help. That is why we moved, and as difficult as it was, it was worth it. Perhaps finding church members with children the same age, or reaching out to Big Brother/Sister to provide more outing options for the kids, would be helpful, too. 

Anyway, it’s not my place to advise, as every situation is different. I’m just letting you know how I and my family are doing it. The more my children know and understand, the safer they feel when tension rises during a particularly debilitating day. Family time and outings have brought us together and filled my children’s memories of their childhood with fun, not illness (I hope). It is seriously a balancing act. Some days we get it right, other days we are disasters as parents. But it is all a learning curve. There is no way that an outside person can give advice or judge your situation, because every family going through this has a unique set of circumstances. But this has been what has worked for us so far. 

Only time will tell if our children grow up appreciating their childhood or not. But we will figure our way through this maze as we go along as a family, balancing compassion, education, and quality time together while we battle this illness and pray for a cure.