When to Reveal You Have Hemophilia

Who should I tell? What do I tell them? What do I do if they act differently towards me after I tell them? These are all questions persons with hemophilia may ask themselves. Revealing to others that you have hemophilia can be uncomfortable and difficult; especially when relaying this information to someone you just meet or don’t know very well. There are no right answers to any of these questions; only you can decide when to reveal this part of yourself to others. A good rule of thumb, though, is to tell at least one person in each of your situations (friend, teacher, coach) that you have hemophilia. This helps ensure you have allies and confidantes in all walks of life.

For most, talking to someone who truly understands hemophilia is helpful. That’s why it’s important to develop and foster relationships with people at your treatment center or local hemophilia advocacy organization.

Being prepared about who to tell and what to tell them, along with support from friends and family, will make it easier when it comes time to reveal you have hemophilia. Your healthcare team can help answer your questions. They may even have examples of what has worked for others in the past.

Who should I tell?
For some people in your life, you should tell them you have hemophilia when you first interact – this is to protect yourself and make sure those around you can help, should you have a bleed. Who are these people? It may seem obvious, but these people include your healthcare providers (doctors, nurses, dentists, pharmacists be completely open and honest with them. It’s important to tell your gym trainer and sports coach as a safety measure, as they) gym trainer and sports coach. Your healthcare team is dedicated to keeping you healthy, and you should can help guide and counsel you regarding training regimens and what sports are best for you. It’s also a good idea to talk to your coach about if, and how much, you should tell your team members.

What about the not-so-obvious, like classmates, friends or someone you’re dating?

Classmates
For most people, telling all your classmates isn’t necessary. Start with a select few and see how you feel. Then, maybe tell a few more. It is, however, important to tell your teacher and school nurse. That way, if a bleed happens, you don’t have to pretend nothing is wrong or spend time explaining what is happening – they will already be aware and able to help!

Friends
Start slow. Tell a few of your closest friends and see how they react. Not every single Facebook friend needs to know (unless you want them to!) that you have hemophilia. Close friends will support you and even help you decide when, and who, to tell in the future. The decision to tell friends may evolve over time. You may decide to tell fewer friends, or more. Whichever path you choose, you are in control.

Someone you’re dating
It's natural to be scared that your date might react negatively, but successful relationships are based on truth and honesty. Try giving them some time to get to know you before you tell them. Remember, you have everything to gain from being honest about it (when you feel the time is right). You can explain that the condition is not contagious, and that you will live a long and happy life. While they may be scared at first, their greatest concern is likely to be for your well-being.

What Do I Tell Them?
Hemophilia is a rare condition, and although most people have heard of it, not many know exactly what it is and how it affects you. Here’s a checklist of things you may want to say when you reveal to someone that you have hemophilia.

• Hemophilia is a condition that prevents the body from forming a strong clot (controlling bleeding or coagulation) – which your body uses when it tries to stop a bleed. People with hemophilia do not bleed more intensely than those without; however, they can bleed for a much longer time.¹
• Hemophilia is not contagious. There is no possible way your friends, classmates, teammates or boyfriend/girlfriend can catch hemophilia from you.
• In the majority of cases, hemophilia is an inherited condition. You were born with an impaired or missing gene – the one that helps to form a blood clot.
• Hemophilia can be managed with factor products – a treatment that replaces the missing or low factor levels in your blood.
• Hemophilia does not limit you from enjoying most activities – even sports! Some activities are too risky for those with hemophilia, but there is always a way to find an alternative way to participate.

What do I do if they act differently towards me after I tell them?
Some people might act differently then you expect. They might be incredibly supportive, or might be somewhat confused. After you tell them, they will likely ask you many questions, so be prepared! If someone you tell tries to or offers to help, acknowledge their support and talk through a way they can assist you. If someone you tell stops answering your calls or returning your text messages, know that it is likely because they are confused. Give them time to internalize the news and let them know you are ready to talk about it again when they are.

The most important thing to do, whatever the person’s reaction, is try to keep things as they are. Talk as much as you normally talk. Hang out as much as you normally hang out. There may be a need for some adjustment time, but if you work together, your friendship or relationship can be just like it was before you told them – sometimes, it can be even better!

¹What is Haemophilia?, The Haemophilia Society, Accessed September 20, 2011