friends, peers and PH


"I have to take my treatment at school, which means I have to do it between classes. I get to class late every day now, and everybody asks why I'm late. I want to explain to them that I have to take medicine, but I'm afraid that they will make remarks."

"I've made new friends, and these new girls are more concerned about body image than my old group. It's hard to explain everything about PH all over again."

"My friends act like I'm normal, which is nice until I'm in a situation where I can't run, swim, or be extremely active. I wish they would show more sensitivity to my disease and accept the fact that I am different."


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The Balancing Act

Being a teenager means that you have entered a stage in your life when you want to try new things, be more independent, and develop your own identity. This is a time in life that is both exciting and challenging. As a teen with PH, the fact that you have a chronic illness will be added to the usual issues and challenges that many teens face, such as peer pressure, body image and sometimes even bullying.

Spending Time with Friends

Going to the movies, a school sporting event, or hanging out at someone’s house — all fun activities, right? Doing these things might mean bringing your medication or oxygen along with you. At times it may also mean that you can't join in on the activities with your friends. One teen shared, "If I want to go out, I will have to bring my treatment equipment with me, and I'm afraid of what my friends might say when I need to take my medicine."

Being with your friends means that you have to balance your health needs with your social life. This means feeling independent enough to take your medication and also feeling comfortable enough with letting your friends see you take care of your PH. Some teens may feel embarrassed to the point that they decide to stay home rather than go out with their friends.

Peer Pressure

Peer pressure occurs when your friends are pushing you to do something or act in a certain way in order to fit in.  Sometimes this isn’t a big deal, but other times you may be uncomfortable with what your friends are asking you to do. Many teens give in to peer pressure because they worry about losing their friends. Friends might pressure you to try drugs or alcohol, stay out past your curfew, or lie to your parents about where you are going. You might feel compelled to take part in activities that can put your health at risk including running, swimming or playing active sports. One young adult described, “I found that the times I felt the most pressure, particularly when I didn't want to tell someone about PH, was when my friends or acquaintances took off running, or wanted to go hiking, bike riding, etc. I was always tempted to go ahead and try.”

As a teen with PH, these things can actually put your health — and your life — at risk. It can be hard to tell your friends that you can’t or don’t want to do something. You might worry that your friends will not want to hang out with you anymore. But remember, if they are good friends, they do not want to put your health in danger and will not pressure you to do anything you do not want to do.

Bullying

Another challenge that many teens face is bullying. Bullying is unwanted, repeated aggressive behavior such as spreading rumors, making threats, physically or verbally attacking someone, or purposely excluding someone from a group. These things can happen in-person or online. Sometimes people don’t take bullying seriously or they think that the victim should “get over it” or “toughen up,” but bullying is a serious and dangerous situation that can result in severe consequences for the bully and the bullied. 

Teens with PH may get picked on for their medical equipment, scars from surgeries, or just because they have different health needs than the teens around them. Becca, a 19-year old teen with PH, shared, “I even had someone look at a picture of me, put her hand over my scar and say “You’d look way better if you didn’t have that.” Bullying is a very hard thing to go through. No one has the right to make you feel bad about yourself. If you are being picked on or bullied, let your parents and school administrators know what is happening. You can also visit stopbullying.gov to learn what you can do to prevent, respond to, or help stop bullying.

Self-Image and Dating

Your teenage years are a time when your body and your tastes are changing. It might feel important for you to begin to express yourself through the clothes you wear. Teens with PH sometimes worry about how they can dress like other teens while still accommodating their PH. You probably want to fit in with your friends, but you might be the only one of your friends who has a catheter or an oxygen tank. 

You may also be interested in starting to date. Dating can be stressful at any age. For example, it’s hard to have feelings for someone and not know if they like you back. You might start to be particularly aware of what you look like, what you say, and how you interact with your romantic interest. For teens with PH, this can be especially stressful. Not only do you have the typical worries that are a part of dating, you also may worry about your PH may impact how a romantic interest may relate to you. One teen told us, “Having PH can definitely make you feel undesirable, especially if you are already self-conscious about treatment equipment and oxygen." If you have a significant other, you may feel pressured to be physical in ways that you are not comfortable with or that could put your health at risk.

Adapting and Moving Forward

Being a teen with PH can be tough, but it does NOT mean that you can’t have great friends, feel good about yourself, and fit in with your peers!

Tip #1: When you feel ready, talk to your close friends about PH

If you have close, supportive friends, you may want to explain to them what PH is and how it impacts your life. Choose to tell friends who you trust and who you feel will be supportive and understanding. You could even practice with a parent, if you feel nervous. Your friends are probably curious about your PH, but may be afraid to ask you about it for fear that they will offend you. So start the conversation yourself! If you need to take your medication while you are hanging out with your friends, this may be a good place to start. Show them your treatment equipment and explain to them why you need it. This will likely spark a conversation about what PH is. You can explain to them what kinds of activities you can and cannot take part in. If your friends know what PH is and see your equipment, it becomes familiar to them and less awkward for you. Shannon, a 17-year old with PH, even brought her best friend Jen to PHA’s 10th International Conference.

Explaining PH will hopefully make your friends more sensitive to planning future activities that you can take part in. If they do make plans that you can’t take part in, you can remind them of your conversation. This will hopefully make it easier for you to hang out with your friends and feel comfortable with them. This will also allow your friends to get to know you better. Carson, a 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.”

Tip #2: Don’t let peer pressure put your health (and life) at risk!

Not giving into peer pressure can be very hard. Rather than taking that sip of alcohol or going on a strenuous hike, explain to your friends how doing those those things could put your health and life at risk. They will understand and be less likely to pressure you to do anything that could be harmful to you. If people don’t know about your PH and try to pressure you, be calm and take their questions or comments as an opportunity. Becca told us, “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.”

If you feel uncomfortable explaining the risks to your friends or other teens, then practice saying no or have a reason ready to use to leave early. You can have a pre-arranged signal with a friend, sibling or your parents for them to text, call or pick you up. Being prepared will help you feel safer.

Tip #3: No one deserves to be bullied

You should never be bullied or made fun of. If this is happening to you, talk to a teacher or a school administrator you trust. Tell your parents. While you might feel like you are “telling on” a peer, this is actually a way of standing up for yourself. You can also talk to your close friends about what’s going on. Being able to share your pain with trustworthy friends will feel good, and your friends may even help you to stand up to the bullies. If you are being bullied because of your PH, reach out to other people who have PH and talk to them about their experiences with bullying. You can connect with other teens who have PH at PHA Teens, a secure social network for teens living with PH.

Many people who are bullied end up becoming bullies themselves. Don't let that happen to you! One PH teen says it perfectly, "I believe my heart condition has made me a better person. I have been picked on because of my scar, my extraordinarily long hospital visits, and the way my medications have affected me. This is why I'm never the bully." Use your experience with adversity to stand up for others who aren’t able to. Setting an example for others to stop bullying is a powerful gift.

Tip #4: Get creative with your PH equipment!

Shannon, 17, at the 2012 PHA Conference Fashion Show: 'Periwinkle is the new black'Shannon, 17, at the 2012 PHA Conference
Fashion Show: "Periwinkle is the new black"

If your PH makes you feel embarrassed about your body and how you look, get creative! Find ways to hide your pump and catheter. Decorate your oxygen tank. Put your medications in a cool looking bag. If you are confident about how you look, other people will respect you and you will feel better about yourself. Shannon emphasizes, “Just be yourself and don’t worry about what other people think.”

Tip #5: Dating

If you worry that your romantic interest might not want to date you because of your PH, remember the many aspects of yourself that you like and all that you have to offer. PH may be a major part of your life, but it doesn’t mean that it makes up all of who you are. If you are worried about your PH equipment being a “turn-off” to your romantic interest, get creative with your clothing. If you are in a romantic relationship with someone you trust, you may want to consider explaining to this person what PH is and how it impacts your life (see Tip #1 for some additional guidelines).

You have the right to feel comfortable and safe in a relationship. If your significant other is pressuring you or making you feel uncomfortable, speak to your parents or a counselor. If you have questions about what love is, what it isn’t, and what you should expect from a relationship, check out the Bill of Dating Rights.

If you are considering exploring a sexual relationship with your significant other, be sure to speak to both your PH specialist and your primary care doctor. Pregnancy can be dangerous for women with PH. The worst thing you could do is decide “in the moment” and not be prepared. If you are feeling pressure from your significant other – either to go farther physically than you are comfortable with, or to not use protection – speak to your parents, a school counselor, or another adult whom you trust for advice on how to explain to your significant other what you want and need. No one has the right to make you feel like you “have to” do something that you are uncomfortable with or that puts your health at risk.

More to Explore

Meet Other Teens with PH

Information for Teens with Chronic Illness

By Nicole Vengrove Soffer, MSW, LCSW, of the Division of Adolescent/Young Adult Medicine at Children's Hospital Boston. PHA is grateful to all the teens who shared their experiences to make this resource possible. Additional review by Virginia Maril, MPsy, Texas Woman's University.

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

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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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.