Emerging into adulthood is pretty scary...and when you’ve grown up with cystic fibrosis, emerging into adulthood is terrifying. When most adolescents reach their young adult years, their growth can be steady and beautiful like a flower emerging from the earth. With cystic fibrosis, it is almost always a hard shove from pediatric to the grown-adult world. I recently turned 27 years old. To me, it’s a number I never thought I would see. In a matter of years, I’ll be in my thirties. When I was born, the life expectancy of a CF patient was 35 years old.
Let’s face it: a lot of us with CF were coddled. I know I was. Every fellow CF-er I know was treated like precious cargo from a baby into adolescence; and here we are now -- trying as hard as we can to assimilate into adulthood in a world where we have to take care of ourselves. Of course, most of us are privileged with big support systems (i.e., family, friends, doctors, nurses, home health), and these people don’t just go away after we’re thrusted into the big, wide world of adult healthcare. However, we need to learn how to do things for ourselves if we want to beat those silly life expectancy rumors (especially those of us who have had — or are going through — a transplant).
Through all the lung infections, hospital stays, and insurance company-induced rage, we must be able to smoothly transition into our own. It’s so important because we can’t rely on our parents forever — no matter how much we/they want us to.
But how do we do that? It’s something you and your village need to work on together. Unfortunately, you can't push the baby bird out of its nest to see if it’ll fly in this scenario.
Parents of CF patients: as your sons and daughters, we know you’re doing the best you can. We know that this is the last thing you wanted when you found out you were expecting a child. You, along with the rest of our village, are our rocks. You probably know more about what’s going on than we do when it comes to our sickly organs. But that should change. Instead of letting your young ones drift off on the iPad during doctor's appointments, have them listen and try to understand what their doctor is saying. Work with their care team on the best way to discuss intimidating topics. Create words or phrases that make it more palatable for your child. “65 Roses,'' a.k.a. cystic fibrosis, was invented by a patient who couldn’t pronounce the name of their own disease. Imagine how much easier it would be for them if we kept this going with other difficult parts of the disease.
And for those of us who are teetering into adulthood, it’s even more important. The second we turn 18 years old, we’re thrown into the adult side of doctors’ offices, hospitals, and insurance. We can no longer pass along the lady on the phone to our parent or guardian without a lengthy over-the-phone HIPAA agreement that, “yes, I allow my mother to speak on my behalf.” If you give the tools to your children early on, they’ll be ready to face the hard reality of depressingly beige clinic walls and unfriendly voices over the phone.
Put the insurance representative on speaker so your child can listen in; ask the doctors to explain things in ways that your child will understand, and let your child know that it’s not so scary. It can be done. I’ve been doing it for almost a decade now, and as much as I miss being a kid, I know the only person who can speak up for myself in the medical world is me.
It’s not just up to our parents and guardians, however. You, the adolescent CF kid, need to be active in your own medical journey. I know you try your best, and I know a lot of it is hard to process. I’ve been in your shoes… basically we all wear the same metaphorical shoes. Though our journeys may vary differently depending on our varying gene mutation, I think we can all agree that we share the same anger and resentments. You can’t let those things control your life. Take that frustration and put it into something else more productive. If your goal is to get ahead of your CF, do it. Take that frustration and take care of yourself how you’re supposed to: do your research, find a CF community, and create from there. It’s so much easier when you can talk to people who understand exactly what you’re going through. I created poetry out of my disappointment with my ailing body. Creativity can come from bad places, shaping into something you’re proud of. In turn, you’ll be proud to be a CF patient, even though it seems like our bodies are against us in every way possible. You won’t need your parents to guide your every twist and turn -- you’ll learn how to listen to your body for clues, and learn when to get help or when you know you’ll be okay.
Advocating for ourselves is the hardest thing to do when our doctors won’t listen to us. But you’re in tune with your lungs -- only you know what you feel. You become confident and don’t even want anyone else speaking for you at this point. So, start today. If you’re not one to make your own appointments, or don’t know what half the medicine you take is for: learn. I know we all can. This disease is debilitating, but we are stronger than we know.
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