Ten (almost 11) years ago, I became a young mom at the age of 17. Bringing my son home was such a bittersweet moment — I was so in love with him, but I knew my life as a kid was over. Two weeks later, my son's newborn screening test came back positive for cystic fibrosis.

During the first year of his life, we were at the clinic once a week. Later on, it was more like once a month, at the least. These visits were all about educating me about cystic fibrosis — learning about the disease; what is happening to the body on the inside; what to watch for as a parent/caregiver; what do the various medications do; when and how does my son take his medications. But what was never really addressed were the mental health effects that cystic fibrosis has on our children. 

Thankfully, my son has been very physically healthy. However, on the flip side of that, he has struggled with his mental health specifically because of CF. He has many questions that I cannot give him the answers to, which is heartbreaking. How are you supposed to comfort your child when you do not have the answers, and you can’t relate on their level?

Let's be real…cystic fibrosis sucks. No child deserves to live with it, and as a parent watching my son do his treatments, take his medications, or take his enzymes like candy with every meal, it breaks my heart.

But what really did me in was when he started asking the tough questions. Questions such as, “Why do I have to have this?” “Why am I the only one?” “Why did God want me to have this?” There are also comments such as, “I hate having CF,” “I just want to be normal,” and “this isn't fair.” 

I can give my son answers on a surface level, explaining the defective genes and the scientific aspect of the disease. But that's not what he’s asking. He is feeling this suffering on another level that I cannot fix for him.

I try my best to explain that everyone is different, and even went as far as explaining there are worse diseases out there that he does not have. I have tried to explain how there are others out there with CF just like him. But even with those answers, it doesn’t feel like enough. He is valid for feeling this way about a disease he has to live with every day. I want him to know that and that it is OK to feel however he feels. But how do I answer his questions? A lot of times, I agree with him and say things like, “No, it is not fair,” “I hate this too,” “Buddy, I do not know why God chose you,” or “I want it to go away too.”

When I look into cystic fibrosis support groups, I hardly see anything that has to do with the mental health toll it is taking on our children. I do not think this is talked about enough, and I know there are other parents/guardians out there who are struggling with the same thing. How do we support our loved ones during this time of questioning and not understanding the “why me?”

Mental health is trending in many aspects of life. I am a middle school teacher, and I see the effects of mental health in students every single day, including students who are healthy and do not have a big diagnosis hanging over their head. Adults are struggling daily as well, just under normal life circumstances. Why are we not trying to invest more into the mental health of those with CF before depression or anxiety hits, before the suicidal thoughts. I sit back and wonder, what difference would it make if we focused on preventing the mental health effects — or at least taught people how to cope in a healthy way — just as much as we focus on preventing physical damage to their bodies?

Interested in sharing your story? The CF Community Blog wants to hear from you.