Managing Hemophilia Dealing With
Relationships–Tips for Teens
Figuring out how to get along with other people is one of many challenges facing every teen. And, not surprisingly, having hemophilia adds some complications to figuring out relationships.
Who should I tell? What should I say about hemophilia? What should I do if people act weird after I tell them? What do I say if I have a bleed at school or during a sports activity? Will my girlfriend feel differently about me if I tell her?
These are some of the many questions teens with hemophilia usually have about relationships. And there is no "right" answer to any of these questions. The answers for each teen will be different depending on personality, health, school, friends, and family situation.
Hemophilia And Relationships: To Tell Or Not To Tell
The first and most obvious question for teens is when or if to tell other people about hemophilia. Whether you’re thinking about friends, teammates, or someone you’re dating, you’ll want to find the approach that’s best for you.
For some teens, telling everyone that they have hemophilia feels like the right thing to do. If everyone knows, you never have to worry about anyone finding out! Plus, if you have an injury or bleed, you don’t have to pretend that nothing is wrong or spend time explaining what is going on. Your friends will already know and be prepared to help.
For other teens, telling only a few close friends is much more comfortable. You have the support of trusted friends without the concern about what everyone will say or think. You can pick who to tell and when to tell them. This approach may give you more of a sense of control over your life.
Remember too that the decision about whom to tell may change over time. You may find that you feel more comfortable telling others after receiving supportive responses from friends. Whatever your decision, be sure that someone in each situation (school, team, etc.) knows about your hemophilia – just to be safe.
Find More Help And Resources Here
- Get an overview of hemophilia.
- Learn more about educational programs.
- Proactively manage your health insurance.
What To Tell
Although hemophilia is a rare condition, a lot of people have heard of it. Unfortunately, what many people have heard is not true or not up-to-date. So remember that you may be talking to someone who has muddled or even wrong information.
There are several key points you may want to make when you tell someone about hemophilia.
- Hemophilia doesn’t stop you from participating in most activities. In fact, there are many more things you can do – music, travel, many sports*, volunteer work, clubs – than things that may be too risky.
- Hemophilia is not contagious. No one will "catch" hemophilia from you.
- Hemophilia is a condition that affects how your blood clots – more slowly than with other people, but it does clot. You will not bleed to death from a minor cut.
- Hemophilia can be managed very well by treatment with factor, a medicine which replaces the missing element in your blood. With factor, your blood will clot effectively.
- Hemophilia is usually an inherited condition. You were born with a missing or defective gene which you most likely inherited from your parents.
For most people, a simple explanation is best. If your friends want more detailed information, help them find websites, such as ThereForYou.com, where they can find accurate answers to questions they may have.
Dealing With Reactions
No matter how carefully you tell people about your hemophilia, you will get quite a variety of responses. Silly as some questions may seem, try to keep in mind that most people mean well. What matters most is how you deal with the responses you get.
Some common questions your friends may ask when you tell them about hemophilia are:
- Can I catch hemophilia from you?
- What happens when you get hurt? Will you bleed to death?
- Can you still play (tennis, soccer, basketball)?
- What should I do if you get hurt when we’re together?
The best response is patiently giving simple answers, even to questions you’ve been asked again and again. Keep in mind that your friends may simply have old or wrong information that they need to change. It’s also true that most people only grasp parts of what you say about a new or surprising piece of information.
Some common things your friends may do when you tell them about hemophilia are:
- Try to help – Good friends will try to be helpful. Appreciate their support, even if what they try to do may not be quite right. Over time, you’ll figure out together how to be most helpful.
- Avoid you – Whether from fear or prejudice, some kids may not want to hang out with you as much. Don’t take it personally — just remember that it’s their problem. And try to stay open — many kids will be back once they get used to the idea.
- Keep things the same – You’re the same person as you were before your friends knew about hemophilia. So whether it happens right away, or after a bit of adjustment, there’s a good chance that your relationships can be pretty much like before.
Hemophilia And Sports*
If you are playing on a sports team, you will need to tell your coach or trainer about your hemophilia right away as a safety measure. It’s probably also a good idea to talk to the coach about what or how much to tell other members of the team.
Part of the decision about telling teammates will depend on the type of sport. Higher contact sports, such as basketball and soccer, require a different level of teammate awareness than low contact sports, such as swimming or golf.
An advantage of telling teammates is that you won’t have to pretend nothing is wrong when you are having a bleed. On the other hand, your teammates may start to act differently toward you if they know. If this happens to you, remember that usually teammates get used to the idea over time and the team continues as before.
*Note: Be sure to consult your physician or treatment center before beginning any exercise program or participating in sporting activities. If an injury occurs, contact your physician or treatment center immediately for the appropriate treatment.
Living With Hemophilia: Reaching Out
For most teens, talking to someone who understands first hand what they’re going through is really helpful. Your treatment center or local hemophilia organization may know about groups of other teens, that meet in person or online. If you’ve been to hemophilia camp, you may have made friends you can keep in touch with. You may also want to check out some of the teen activities sponsored by national and state hemophilia groups.
The healthcare professionals at your treatment center can also be helpful with relationship questions. After all, they’ve worked with a lot of teens. The doctors, nurses, and social workers may have some ideas and suggestions they’ve learned from other patients.
It’s not easy to deal with all the emotional issues that teens face, especially with a complication like hemophilia. By thinking ahead about some of the special issues you face – who to tell, when to tell, what to tell – and getting support from family, friends and your treatment center care team, you have a great chance of having what all teens want – a life filled with activities and people you enjoy.
Note: ThereForYou.com does not recommend a particular treatment for specific individuals and recommends that you consult your treatment center or physician before pursuing any course of treatment.
