Is it normal to feel angry?
Yes, it is normal to feel angry about a PCD diagnosis. If you felt angry when you got this diagnosis, or if you still feel angry sometimes, that is a valid, human response to something that is genuinely unfair. You didn't ask for this, you didn't do anything to cause it, and it changes some things about your life that you didn't want changed. Anger makes sense. The important thing is that it doesn't stay stuck. If it's lingering or getting in the way of your daily life, talk to someone you trust. You don't have to work through this alone.
Is it normal to feel scared, or embarrassed?
Yes to both, and both tend to get better with time. Fear is one of the most common reactions to a diagnosis like this, especially when everything is new and unfamiliar. Most of that fear comes from uncertainty, and the more you understand about your condition and how to manage it, the more that fear tends to settle. Feeling self-conscious about taking medication in front of people, or having to explain why you need to eat regularly, or calling any kind of attention to yourself around your health. These are really common feelings, especially for teens. What we'd offer gently is this: the things that embarrass us most when we're young often stop feeling like a big deal as we get older. Your health is not something to be ashamed of, even when it doesn't feel that way yet.
What if I'm tired of dealing with PCD?
That is one of the most honest things a person managing a chronic condition can say, and you are allowed to feel it. Managing something for life is tiring, especially in the moments when you just want to not have to think about it. Those feelings are real. Give yourself permission to have them. Just remember to stick to your routine in the midst of it, because your routine is what keeps you well enough to do everything else. If this feeling becomes persistent or overwhelming, please reach out. Carnergia's Teen Support consultation exists exactly for moments like this one.
What if I don't want to take my medication anymore?
If you don't want to take your medication anymore, know that stopping it is not safe, even for a short time. The consequences of untreated PCD can be serious and fast-moving. This isn't about rules. It's about the fact that levocarnitine is what makes everything else in your life possible. If you're at a point where you're genuinely struggling with this, please talk to someone: your parents, your physician, or us. We want to help you find a way to make this feel more manageable, not more punishing.
What if my parents worry too much?
This is one of the most common things we hear from teens with PCD, and honestly, it makes complete sense on both sides. Your parents love you, and this diagnosis scared them. Their worry almost always comes from exactly that place. At the same time, you are growing into your independence and you need room to do that. The most effective thing you can do is build their confidence in you by being consistent and responsible with your own care. The more they see you taking it seriously, the easier it usually becomes for them to take a step back. If this tension is a real source of stress in your home, a Family Planning consultation with Carnergia can sometimes help everyone find the right balance together.
What if I feel alone?
If you feel alone, know that you are not. We know that's easy to say, and we're saying it anyway because it's true. PCD is rare enough that it can feel incredibly isolating, especially if no one in your immediate world has ever heard of it. But there are other teenagers out there living with the same condition, asking the same questions, and building full, meaningful lives. Finding them can make a real difference. Connecting teens with PCD to each other is one of the things Carnergia is most committed to.
Are there other teens like me?
Yes, there are other teens like you. More than you'd probably expect. PCD is rare, but the community is real. There are teenagers who have been managing this since birth, teenagers who were just diagnosed, athletes, honors students, people who play instruments and travel and fall in love and do everything you do, who also happen to take levocarnitine every day. You are not the only one. Reach out to us through the consultations page. Connecting people with PCD to each other, especially teens and young adults, is one of the most important things we do.
If you're struggling with your mental health, please reach out to a trusted adult, counselor, or your doctor. You don't have to figure it out alone.
Last updated October 2026.