4 Things Parents Need to Remember as Their Kid Goes Through Chronic Illness

Dear parent with a chronically ill kid,

I’m sorry that you have to watch this happen to your child. I know this is not something that is easy for you to go through. But, I the chronically ill child have a few things I need to share with you.

1. First thing’s first: please believe your child.

You may think they are exaggerating or maybe it’s hard to come to terms with what is happening to your child. But, when your child shares with you new symptoms or shares with you their pain or how sick they feel, believe them. Everyone else says we are dramatic and that we are making everything up. Please be the one person that’s on your child’s team. They need you.

2. Please don’t talk about how hard it is to have a sick kid in front of your child.

Your child may already feel like a burden to you especially. When we hear you talking about how hard it is, we might feel even worse about something we can’t help. Also, we are the one going through this. If you need to vent it out to someone, just try to wait until your child isn’t around to hear it. (It also does good to remind your kid that you are frustrated for them, not at them).

3. We are not experiments for fad diets or exercise trends.

Your child will likely not be cured with yoga, trendy diets, crystals, cycling classes, or outdoor retreats. We are independent human beings with actual, medical, illnesses. Though some may be into some of those things — maybe your child enjoys yoga, maybe finds solace in crystals,or just loves a good trendy health food. But, it’s not a cure-all. And with that, do not deprive of your child of medication because you think pharmaceuticals are bad. People with chronic illnesses need the medications they are prescribed by actual doctors. If you are concerned the medications are more harmful than good, then talk to your child. We know our bodies better than you do. If medication is not doing well we can talk to our doctor and find another step. But, don’t decide to take us off a medication on your own. It could do more harm than you know.

4. Chronic illness are chronic. This isn’t just a long cold. We won’t magically get cured.

It’s already hard enough to come to terms with on our own that we aren’t going to getter better; it’s even harder when parents keep pushing us towards a non-existent recovery. This isn’t to say we won’t find treatments that help control our illness, but that isn’t the same as “getting better.” I ask that you try and come to terms with this along with your child. It’s awful, and frustrating, and hard to deal with, but we deal with it 24/7. It can be hard to hear you talk about “Well, you’ll get better soon.” I know you mean well, but it can really bring me down.

Parent of a chronically ill child, I thank you for reading this letter I have written to you. If you are reading this and thinking, “Well, you’re not a parent, what do you know?” Well, you are right, I’m not a parent. But, I am chronically ill and I had been since the day I was born. My parents are amazing, loving, caring parents, and they continue to support me in my chronic journey as a young adult. But, like any human, they are not perfect. These are the things I noticed (a lot) growing up and the more people in the community I meet, the more common I realize these things are.

So, dear parents, I ask you to listen to me and to your own sick kid. Be by their side through this journey that we are all going on together.