Coping as a Teenager with Pulmonary Hypertension


"It's a hassle remembering what times I have to take my meds now, and cleaning all of the equipment and whatnot. I really hope that this medicine helps ... I just find it a huge distraction.”

“It makes me upset that pulmonary hypertension is holding me back from doing things I love, like baseball.”

“Everyone asks me about my pulmonary hypertension bracelet lately. It's nice to be able to explain but it's a bittersweet feeling. After they hear that I'm sick the way that they look at me is forever changed.”


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What to Expect

Emily and friendsBeing a teenager is all about becoming more independent, meeting new people, figuring out how to fit in with your friends, thinking about who you are, and making plans for the future. These years can be rough for anyone, but for teens with pulmonary hypertension they can sometimes feel especially unfair and stressful. You may be trying your very best to do it all: hang out with friends, keep up with homework, and come up with answers to big questions like: “What do I want to do with my life?” And then, on top of everything else, you’re expected to deal with PH. Between all the medications, missed school, and doctors’ appointments, it can feel like a lot.

We talked to some teenagers living with PH and asked them to tell us about what they had to deal with. We also asked them what they wanted other teenagers with PH to know. What follows are some of the things we heard.

“We’re not freaks! But we are different.”

Lots of teens with PH talk about looking and feeling different. Some feel different because of all the medications and side effects they’re dealing with. Some get out of breath in gym class when everyone else is just warming up. Some worry about fitting in because they can’t play on the soccer team or try out for cross-country. While lots of the teenagers we spoke with were lucky enough to have close friends who knew about their PH and stuck by their sides, the pressure of trying to fit in with classmates who don't know about PH can be a source of stress.

Things that everyone else gets excited for can be harder to plan for if you have PH. Shopping for clothes and makeup can be trickier if you need to think about a pump, facial flushing or a surgery scar. Lots of high school students look forward to asking someone to prom or finding the perfect dress or tux. But teens with PH told us they also have to plan to find a dress that works with their pump, find a date who doesn’t mind that they’re on oxygen, or convince their parents to stop worrying enough to let them stay out late with friends for one night. Lots of teens with PH are looking to find a balance between their "PH life" — symptoms, medications and doctors' visits — and their high school life — school, parties and friends.

“Everything’s up in the air … but change can be good.”

Teens with PH also deal with a lot of change. They say they’re becoming more independent from their families (although their parents don’t always make it easy!), they’re setting goals for the future, and some are thinking about moving out of their parents’ houses in the next few years.

Some teens are frustrated to find that the plans they’re making all need to be adapted to accommodate their PH. If you’re planning on attending college, you may have to consider finding a college close to home or near a PH center, requesting a private room or seeking accommodations from your school to make your college experience successful. You might need to start thinking about transitioning to an adult PH doctor. This can be a pretty intimidating step, especially if you’re close with your current PH doctor and nurses. You may also have to start taking on more of your medical responsibilities, from managing your medications to ordering prescription refills.

Life changes, even good ones, can cause stress. Keep in mind that 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. One teen told us, “PH is on my mind all the time. I have friends, but sometimes I just want to be by myself." You may also experience physical symptoms, like upset stomachs or trouble sleeping. While it can sometimes be difficult to identify symptoms as they’re happening, it’s important to start paying attention to your emotional and physical ups and downs. These changes can influence your PH and your overall health, so talk to your parents and your PH doctor if you notice any symptoms or changes in behavior.

Lessons to Live By: Teens Share Their Wisdom

Learning how to deal with all these changes is a process that takes time and practice. While it’s not always easy, understanding more about PH and starting to take responsibility for your own health can help you feel healthier and more confident. How you view yourself will influence how others view you. If you are happy with who you see in the mirror, your friends and classmates will be too.  

Lesson #1: When it feels right, be open with your friends.

Take time to talk to your friends about PH. You are a survivor and you deserve the love and support of the people closest to you. Most teens are amazed at how supportive true friends become once they understand how complicated life with PH can be. One teen recommends being honest about the challenges you face and straightforward in your request for support. She tells her friends, “Life as a chronically ill teen and young adult is not what people think it is. It is a sad, miraculous, triumphant, disheartening and frightening life that we live ... please try to be understanding.” 

Lesson #2: Remember that everyone has a story.

You are not the only one with a hidden story. You may be surprised to find what you don’t know about your friends. One young adult with PH told us, “I’ve learned that if you’re willing to open up, let your friends in and tell them your story, it makes them feel closer to you. They are dealing with something, you’re dealing with something, and it might be different, but it’s a way you can connect. Letting them in, giving them the chance to go through the good times and bad times with you, is really important.”

Lauren and a friend "Pucker up for PH," to raise awareness for pulmonary hypertension

 

 

 

 

 

Teens take part in the "Pucker up for PH" campaign to raise awareness for PH.

Lesson #3: Get creative.

Since self-esteem and appearance often go hand-in-hand, consider getting creative in how you dress. For special events such as prom, shop for a dress or tux that makes you to feel good about yourself. If hiding your scar is important to you, find an outfit that does the trick. Some teens use ace bandages or cute purses to conceal their pumps in discrete places for special events. But most importantly, don’t hide who you are. If how you look is okay with you, it will be ok with your classmates too.

Lesson #4: Believe it: all eyes aren’t on you.

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 are not staring at you … they’re far too busy thinking about themselves!

Lesson #5: Be ready for questions.

Most people have never heard of pulmonary hypertension, so at some point you’re bound to get questions. Think about how you’d like to respond if someone asks you about your PH, oxygen or medication. Becca, a teen living with PH in Arizona, advises, “Having PH, I know that there are people out there who get comments about the IV tube coming out of their shirt. I know the pain, sadness and self-consciousness that come from these insensitive comments. However, when people ask questions or say something that seems rude or insensitive, I remind myself that they most likely did not mean to be rude. I tell myself that if I answer their questions with a smile, then I can help bring awareness to PH. I urge all of you, the next time someone makes a rude or insensitive comment … kindly turn to them and explain what is going on with your body. We can make a difference in the way the world sees those who are different by sharing our stories of survival.”

Lesson #6: Know your rights.

If you are planning to attend college, contact the university’s disability center and explore what accommodations they can offer you given your PH. All universities must have some type of disability program that can offer students appropriate academic accommodations. These may include a single dorm room due to your need to mix IV medications, early registration for classes, assistance getting to classes if walking long distances is difficult, extended time on exams or excused absences. Many young PHers manage to succeed in college by learning their rights and advocating for accommodations.

Lesson #7: Take charge of your health.

It’s going to be really hard, if not impossible, to leave your parents to go to college or start a career if you’re still relying on them to prepare your medications, remind you to take your pills, or call your doctor when you’re not feeling well. It’s never too early to begin preparing yourself to transition to an adult PH doctor or take on more responsibility for your daily medical management. 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 mix and do this 1-2 times a week, slowly increasing your responsibility. If you take oral medications, fill your own pill box, take your medications without prompting from your parents and learn how to request refills.

Lesson #8: Speak up at the doctor’s office.

Start speaking directly with your medical team. You know your body and symptoms the best — be your own voice. You’ll be amazed at how taking a little responsibility for your PH helps you to feel more independent, mature and capable. Plus it will demonstrate to your parents that you're ready for more responsibility in other areas as well.

Lesson #9: Get to know other people your age with PH.

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. To meet other young people living with pulmonary hypertension, visit PHA’s social network for teenagers, PHA Teens.

Lesson #10: Have fun.

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. You’re only in high school once. Remember, pulmonary hypertension is something you have, not who you are.

More to Explore

Meet Other Teens with PH

Information for Teens with Chronic Illness

Planning for College

PHA is grateful to Darci Albrecht, LCSW, of the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford Hospital and Clinics for her contributions and review, and to all the teens who shared their experiences to make this resource possible. Medical review by Debra Hudock, RN, MSN, CNS, of Akron General Medical Center.

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: April 2012
 
 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.