Teenagers
Being a teenager, you know that this stage in life comes with its own challenges. As you go through adolescence and on to young adulthood, you're going to make more and more decisions independently in all aspects of life—but perhaps most importantly, about your health. Your parents will not always be there at the moment you need to take action. So now is the time to start thinking about the choices you will have to make as someone living with hemophilia—and about the responsibilities that lie ahead of you.
Pushing Limits, Taking Risks
At this age, it's natural that you and your friends want to test your limits by trying new things. But as a teen with hemophilia, you will have to carefully consider your behaviour and the activities you participate in, whether it's organized sports or just hanging out with friends. Is what you are about to do too risky? Should you avoid it?
It's really up to you now to consider the risk and make these decisions. For every unwise choice someone makes there are consequences, and for you it may mean not being able to do the things you like because of an injury. So next time you have a choice to make, think: Is it worth it?
Staying Active
At this age, you might want to do what your friends are doing, even though it may not be the best choice for you. A lot of your friends might join organized sports teams and you can too—just make sure to do a couple of things before signing up:
- First, decide if playing the sport is worth the risk of the potential injuries and the consequence of the injuries. Remember that you might need extra infusions and have to deal with pain if you get hurt.
- Then speak to your parents and nurse or doctor to see if they recommend any changes to your treatment, such as starting prophylactic treatment or make a change in the regimen you are already on. It's important to discuss the risks and benefits with your hemophilia team members, especially the physiotherapist. The best choices are made when you have the most information. Before choosing sports activities, get informed.
Taking Your Health into Your Own Hands
The biggest step toward your independence is learning to manage your treatment. If you haven't learned to infuse your factor on your own, now is a good time to start learning. Taking on this responsibility will increase your confidence and help you move towards managing other important aspects of your treatment.
Smart Tips for Staying Safe
Make sure you always have contact numbers or addresses of people, clinics, and health centres that can provide immediate information and necessary medical attention when needed. If you don't already wear one, consider a Medic Alert bracelet to notify others of your condition in case you are unable to.
If you want more independence, you will have to prove that you are doing all of the right things to control your hemophilia. You can't make it go away but you don't have to let it control your life. Take control by remembering to:
- Maintain your treatment routine if you're on prophylaxis
- Treat with factor before an activity that might result in a bleed
- Treat any bleed immediately to lower the risk of damage to your joints
- Always travel with the supplies you need to treat a bleed
- Keep important phone numbers on you at all times—like programmed into your cell phone—including your clinic's number and any emergency facilities in your area
Using common sense will help you control your hemophilia AND demonstrate to your parents that you are capable and responsible.
Your Relationship with Your Parents
Now, between the ages of 13 and 17, you are likely dealing with academic achievements, peer pressure, changing family dynamics, hormones, puberty, sexuality, career choices and discipline—just to name a few things. Not an easy stage in life for anyone! If you think adolescence is hard on you, keep in mind that it's hard on your parents too. You're both going through some major changes. It's perfectly normal to want your independence, but you may find that your parents have a hard time letting go—that's normal too! So cut them some slack when they seem overprotective. Remember that they're used to taking care of you and may need some time to adjust to not being needed as much.
Even when you think you're ready to take on more responsibility for your own health, your parents may need some convincing. You can help your parents get used to your growing independence by assuring them that you are thinking about your health and include them when making activity choices. Seeing that you are asking for more responsibility in managing your own care and making responsible choices over time will help them let go while still being involved and supporting you when you need their help.
The Importance of Open Communication
Getting along with parents at this age is hard for everyone but it's a lot easier if you just talk about your feelings, good and bad. Eventually your good communication and decision-making skills will reassure your parents that even though you're more independent now, you trust them and will involve them when you need guidance with tough choices. Try and remind them that they are doing a good job raising you to be an independent thinker and helping you to become a healthy adult.
Of course, talking to your parents isn't always that easy, so if you need someone to talk to or answer your questions (even the embarrassing ones!) don't forget that the nurses at your local clinic are more than happy to offer you advice, tips, guidance, and the support you need as you grow more independent.