Being a teenager means becoming more independent and making plans for the future. These years can be rough for anyone, but they may feel especially stressful for teens with pulmonary hypertension.
You may be trying your very best to do it all: hang out with friends, keep up with homework, and decide what to do with your life. And then, on top of everything else, you’re expected to deal with PH. It can feel like a lot.
Building resilience and emotional strength
Having PH can bring out emotions you weren’t expecting: frustration, sadness, fear, even anger. It’s OK to feel all of them. Sometimes you might snap at your siblings or clash with your parents. Try to pause, take a breath, and figure out what’s really going on. Are you upset with the person or the situation?
Try talking it out, journaling or going for a quiet walk. If things get overwhelming, talk to your parent or ask to talk to a counselor. Sometimes just having someone outside the situation to talk to can help you see things more clearly
Life changes, even good ones, cause stress. Stress looks different in everyone. When you’re feeling overwhelmed, you might find yourself crying, wanting to be alone or snapping at family members for no good reason. You may also experience physical symptoms, like upset stomachs or trouble sleeping. You can also be euphoric – and still be stressed out.
While identifying symptoms as they’re happening can be difficult, it’s important to pay attention to your emotional and physical ups and downs. These changes can influence your PH and your overall health.
Lessons to live by: Teens share their wisdom
Talk to your friends about PH. You are a survivor and you deserve their love and support.
You aren’t the only one with a hidden story. You may be surprised to find what you don’t know about your friends. One young adult said, “If you’re willing to open up, let your friends in, and tell them your story. It makes them feel closer to you.”
Self-esteem and appearance often go hand-in-hand, so consider getting creative in how you dress. For special events such as prom, dress in a way that makes you feel good about yourself. You might want to hide your pump, but don’t hide who you are. If how you look is OK with you, it will be OK with your classmates too.
If you have an obvious physical difference due to your PH, you may feel like that’s the only thing people see when they look at you. It can be difficult to believe, but it’s true: most people aren’t staring at you … they’re far too busy thinking about themselves.
Most people have never heard of pulmonary hypertension. Think about how you’d like to respond if someone asks you about your PH, oxygen or medication. “We can make a difference in the way the world sees those who are different by sharing our stories of survival.”
If you plan to attend college, contact the university’s disability center and explore the accommodations they can offer, given your PH. Many young people with PH succeed in college by learning their rights and advocating for accommodations.
It’s never too early to prepare yourself to transition to an adult PH doctor. You are your best advocate, so make yourself aware and responsible. Begin by learning your medications and doses. If you are on IV medications, learn to prepare you medications once or twice a week, slowly increasing your responsibility. If you take oral medications, fill your own pill box and learn how to request refills.
Start speaking directly with your medical team. You know your body and symptoms the best. Be your own voice. Taking a little responsibility for your PH helps you feel more independent, mature and capable.
Being a teenager with pulmonary hypertension is sometimes hard, but it can be helpful to remember that you’re not alone. Talking to other teens with PH is one way to get support from people who understand what you’re going through. See our resources below to find other teens like you.
Hang out with friends, listen to music, study, play video games, read books and watch movies. Find time to try something new every couple weeks. Seek out causes you care about and activities you love. Remember, pulmonary hypertension is something you have, not who you are
Connect with other teens who have PH
Meet other young adults and teens living with pulmonary hypertension. Visit PHA’s social network for teenagers, PHA Teens, or find a summer camp that best suit your needs. Many summer camps welcome teens 18 or older.
