living with Ph ... and your family


“Our families love us and when we are sick, it affects them because of how much they love us. Don't ever feel guilty but realize that your family is just as scared as you are. They are just as nervous, as worried, as sad, as upset as you are.”

“I will never be able to show my mom or my boyfriend just how grateful I am to them for all that they've done for me in this past year alone.”


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Living with PH ... and your family?

Your teenage years are an exciting and sometimes confusing time as you transition from being a child to being an adult. During this time, you learn more about who you are and who you want to be as an individual. As this happens, you naturally become more independent and it is normal to be less interested in spending time with your family and more interested in spending time with your friends. You may also find yourself challenging your parents’ ideas or values as you work toward figuring out who you are. Dealing with family can be really hard for any teen, and living with PH can make your relationships with your parents, brothers and sisters a lot more complicated. Even though it might be frustrating, it’s worth the effort to work on these relationships. At the end of the day, family is an important part of our lives, providing us with the support and love we need to make it through challenges like living with PH.

"Mom, I'm not so different!"

Being a teenager is hard and being a teenager with PH can be even harder. Sometimes this ends up making relationships between teens and their parents more stressful than they might otherwise be. Becca, a 19-year old living with PH, told us, “Just like with any regular teen, the parents are scared to let go. With us it’s just a bit more complicated.” Your parents may want to help you with your medications or check in with you all the time. On one hand, that might feel a little annoying sometimes, and on the other hand, it is also nice to know that we are cared for. Sometimes you might feel like you are getting too much attention when it comes to being sick and you might want a little space. Other times it might feel like you need a little extra help with some of the stuff that is going on for you. It’s ok to want to be more independent and to still want your parents’ help. The important thing is to find a balance and to remember that each person in the relationship should try hard to be respectful of where the other person is coming from.

If you have had PH since you were little, it may be just a part of how your family relates to each other. Your parents and siblings might not know how to treat you any other way. This can be really frustrating when you want to be seen as more than someone with PH. It can be hard to develop who we are when so much focus is put on one aspect of ourselves. It can be a different experience if you were diagnosed with PH as a teenager. If that is the case, you need to know that it is normal to feel sad about how much your life has changed. You were probably used to having some freedoms, like getting to go out with friends and do things on your own, that your parents may no longer want you to do. You might find that people suddenly treat you very differently  even parents and siblings  and that can be tough. 

Your parents may worry about your getting sick when you are away from them, and this can impact their willingness to let you stay out late or go out with your friends. You may find yourself arguing frequently with your parents about what you can and cannot do by yourself, like driving, going to parties, or spending the night out with friends. Kiah, now 20 years old, was diagnosed at age 10. She shared, “Balancing your parents’ fears and preparing yourself for facing obstacles on your own is hard.” She’s right – just like a lot of parts of your life, this is a balancing act. Luckily it is one that gets easier with time, patience, and practice.

You may also worry about the impact your PH is having on your parents. You don’t want to be a burden to them. One teen with PH we talked to wondered, “What if I have to go on my parent’s insurance and their premiums sky rocket? Will they have to sell their home? Will we have to move out of state just to get better insurance? Will my mom have to get a job?” It can also be confusing to see your parents sad, upset, or worried. Many teens with chronic illnesses feel a need to protect their parents from feeling this way. This is a lot of extra stress and not one that most teens have to worry about. This might feel unfair, because it isn’t fair. You did not choose to develop PH and it is important to remember not to take on so much worry and responsibility. If you find yourself worried about some of these big issues, share that with your parents. They will likely be able to give you some insight into their situation and help you feel better about it.

"Love them or hate them, siblings are for life."

As you probably know all too well, living with PH can also impact your relationships with your siblings. Siblings might not understand why you have to take so much medication or undergo certain tests. They may also be worried about you and not know how to act around you while they get used to your diagnosis. Older siblings may try to act like they know what’s best for you. Younger siblings may be upset with you for getting extra time and attention from your parents and not really understand what is going on. Kiah told us, “Sometimes parents give more toys, gifts and time to the sibling with the illness and this can cause jealousy.”

On the flipside, you might feel a little resentful or envious of your siblings for being healthy and not having to deal with PH. You might even feel guilty for feeling these things, but that is a completely normal way to feel. You might be watching your siblings get to do things that you are not able to participate in as easily. You might also feel that your parents give your siblings certain freedoms that they don’t give you.

What Now?

Like others your age, you have to prove that you are capable of handling greater independence in order to gain the trust of your parents and the freedom that you want. One way you can show your parents that you are responsible is just by talking to them about everyday things, not just PH. This creates an open line of communication so that your parents have some insight into what is going on in your life. One teen suggested, “Showing your parents that you are more than your health can help them to realize they need to let you do normal teen stuff like field trips and shopping with the friends.” Keeping that open line of communication can also help because when you do need to talk about your health or other serious things, it will feel less awkward starting the conversation. Keep in mind that this is a gradual process and it may take some time for your parents to recognize and trust that you are mature enough to be more independent.

Also remember that it is natural for your parents to want to take care of you and that with some planning and open communication, you can work together to gain more control, independence, and freedom over your life and your PH. Here are some steps you can take to get that independence and maintain healthy relationships with your parents and siblings:

Moving Forward with your Parents

Take charge. Show your parents that you are comfortable taking on aspects of your PH care and that you’re thinking through how you can manage your PH in day-to-day situations. Taking charge shows them that you are taking your health seriously and that you can manage it responsibly. Here are a few ways that you can do this:

  • Speak up when you are at the doctor’s office. Know all of your medications by name and know their doses. Learn what they are for and pay attention to how often you are taking them if they are prescribed on an as-needed basis. Pay attention to any side effects that you may experience and share those with your physician. Also, share openly about how you feel that your health is when speaking with your physician. Ask your PH provider about any test results and what to expect before your next visit. If you have questions about your health, you are allowed to ask them. This is your health and you have the right to know how you are doing from a professional’s perspective. Speaking up at the doctor’s office will show both your parents and your doctor that you take your PH seriously and are ready to take on some of the responsibility for managing your illness yourself.
  • Talk to your parents about what aspects of your PH care you are ready to take on for yourself. When you feel ready, you may want to take care of your central line, mix your medications, or order your oxygen therapy. When you need a prescription refilled, let your parents know that it is time to request one. If you have a refill available through your pharmacy and do not need to see your physician, take the initiative to call the pharmacy and order it. You do not need to do all of these things at once, but each time you are able to successfully take on a new aspect of your PH care, you are showing your parents that you are more ready for independence.

Think it through. You’ll have to negotiate curfews, responsibilities and freedoms just like any other teen. Think through your requests in advance so you can anticipate what your parents might be worried about and have solutions ready. Though it might feel like a lot of work, demonstrating responsibility and the ability to make good decisions works wonders when it comes to gaining your parents’ trust.

  • Negotiate with your parents about things like curfew and activities with friends. Be reasonable with your requests – if you are sick, it is probably not the best time to be going out anyway, and, if you are well, you will still have rules and restrictions to follow just like other teens.
  • Think about how what you are asking to do will affect your PH. Be prepared to tell your parents how you anticipate your PH impacting the activity – for instance, if you are asking to spend the night at a friend’s, do you need to set an alarm for your medication? Does your friend understand what activities are safe for you to do? Do your parents trust you to say something when an activity is not safe? Showing them that you are aware of your health and can take the initiative to be assertive and make good decisions goes a long way towards being given more freedom. Having a plan and talking your parents through how you plan to accommodate your PH will show them you are ready to take on the new activity.
  • Offer to check in with your parents at frequent intervals at first. If they see that you are doing well, they will be more likely to let you go out in the future and you can gradually reduce the need to check in and reassure them. Texting your parents is a great way to check in without drawing attention from your friends.
  • Write down or text your parents the address of the place(s) where you will be going with friends. Let them know if your plans change. Knowing where you will be can help your parents feel more comfortable with your going out. 
  • Even though it might be annoying, embarrassing, or inconvenient, always answer the phone when your parents call. Ignoring their calls increases the chance that they will worry more than they already are. It also sends the message that you do not want to be bothered by them. While this might be true to an extent, try to accept that these phone calls are coming from a place of care and love. Talk to your parents if you feel that these calls are excessive and negotiate a way to check in that feels comfortable for all of you. It is also important to let them know if you will be somewhere where you will not be able to check your phone. For example, if you are going to see a movie, let them know ahead of time when you will be inaccessible. Chances are that once your parents realize that you are able to handle this responsibly, they will give you a little more freedom and require you to check in with them less frequently.

Think ahead. As a teenager, you’re probably already thinking ahead – to the college you want to attend or the job you want to have, to moving out of the house or traveling.

  • For big decisions about your future, give your parents time to adjust to the changes you want to make. “Be open with your parents about what you want your future to look like regarding things like college, moving out, etc,” recommends Anna, a 15-year old PH teen. “If you're clear with your parents early on about how you want to slowly make these changes in your life, they will be less resistant and it gives them time to get used to the idea.”
  • Don’t hide symptoms from your parents. They will be more likely to trust you to do things when you say you are feeling well if you are honest with them when you aren’t feeling well. Demonstrating this in smaller instances, like not going out if you aren’t feeling well, is a good way to show your parents that you will also be smart when it comes to bigger decisions like traveling or attending college.

Focus forward. At times it can be easy to get caught up in the struggle over what you want for your future versus what your parents want. Most schools have professionals who can help you understand different career paths and help you decide what colleges, occupations, or professional school might be a good fit for you.

Back to center. Remember that if your parents restrict your activities, it is because they want to know you’re safe. Just like you may feel at times that your parents are being unfair or unresponsive, they probably also feel frustrated at times and unhappy with being the “bad guys.” When you’re feeling like you and your parents are on opposite sides of an issue, remember that your parents want what’s best for you. Remind them that you appreciate them, even when you disagree.

Gain outside perspective. You may feel like the impact of PH on your family is overwhelming, but it’s important that you don’t try to shoulder these concerns on your own. Think of a trusted friend, teacher, or mentor who you can talk to openly. Maybe your sister or brother would understand. If you ever do feel like you need a safe and unbiased place to talk, ask your parents about talking to a counselor. Often someone outside the situation can offer you a fresh perspective.

Be open with your parents. Tell your parents if you have any worries about how PH is impacting them. Let your parents know if they are saying things about you and your PH that are hurtful to you. Remind them that you love and appreciate them when they do things that help you, and forgive them when they do things that aggravate you. Expect the same from them. You can both help these conversations go smoothly by giving and receiving information in a calm manner.

Moving Forward with your Siblings

Be a friend. Discuss and share everyday things with your siblings, like activities you both enjoy. Ask about their day at school. Care about what is important to them. Your siblings will likely look to you for cues on how to act. You can set the tone for them to treat you like any other brother or sister.

Be open with your siblings. If you’re worried that your PH is impacting your siblings, ask them. Similarly, if your siblings say things about your PH that are hurtful to you, be honest with them about it. Remind them that you appreciate them when they do things that help you, and be forgiving when they do things that annoy you.

Keep your cool. Sometimes when we feel frustrated or jealous, it is easy for us to lose our cool. Maybe you snap at your sister or maybe you all out tear into your brother. Instead of losing your temper, practice calming yourself. Take a moment to step aside and focus on the problem at hand. Are you mad at the person or at the situation? If it’s at the situation, is there something you can do to change it? If it is at the person, how can you share what you are feeling without yelling or fighting? If you are having trouble calming down, go to a quiet spot where you can reflect and calm down. Being angry can affect your mood and your body. You might notice yourself breathing faster and more shallowly. You might feel your heart rate increasing. It is especially important to monitor this and try to calm down.

Expect things to go wrong sometimes. Siblings argue and sometimes say hurtful things to each other. This is a completely normal aspect of being a part of a family. Don’t expect perfection from anyone, including yourself. We all make mistakes and we all need to be forgiven. If you say something hurtful, apologize. If your sister or brother says something hurtful to you, tell them and help them understand why it was hurtful.

Friends for life. Though it can be hard to imagine at times, your siblings might end up being some of your closest friends in life. Treating them with love and respect helps build that relationship. You are also entitled to love and respect from them and are allowed to share when you are not feeling loved or respected. Many adults share a special bond with their siblings unlike any other. That bond comes from going through good times and hard times with them.  Keep in mind that it is all part of the larger process of growing up.

More to Explore

Meet Other Teens with PH

Information for Teens with Chronic Illness

Planning for College

By Holly Gooding, MD, MSc, of the Division of Adolescent and 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: May 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.