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Should I tell other people about my haemophilia?

I have yet to tell people about my haemophilia because they already tease me enough as it is. So should I tell them or not because I don’t want them to know and tease me even more.

First of all, well done for posting your question on this website and for seeking some guidance about this important issue. Telling or not telling people about having haemophilia is a personal decision. When making such an important decision it is useful to think about the advantages (benefits) and disadvantages (risks) of sharing such personal information with others. You have already identified a possible risk and that is that you may be teased more than you already are. But what might be a benefit? Perhaps if certain people know they could be of help if you are injured or have a bleed. This may be important if you have severe haemophilia.

It seems that your main concern is about how people might react to being informed that you have haemophilia. Unfortunately no one has a crystal ball to look into the future to see what might happen. However people may react in different ways, not everyone will react the same way. Some will be supportive and may want to learn more so they can help you when needed, others may be unsure what this means and may not know how to treat you, and some may avoid you for a bit until they can process the new information so it makes more sense to them.

Therefore it is important that if you do decide to tell people, that you provide them with information so they can make sense of it and help them deal with any worries or concerns they might have about you. They will probably have lots of questions to ask and may know a little about haemophilia but it may be incorrect information. For instance they might think that having haemophilia means you will gush lots of blood if you are injured or even worse that you might bleed to death. Can you see how worried they would be if they truly believe that?

Another thing to think about is what is the purpose of telling people? If it is to keep you safe and well then telling teachers or sports coaches and close friends you trust may be a good idea but that doesn’t mean you have to tell the whole class or sports team or people you don’t trust. For instance, if you play a team sport then it would be important for your coach to know about it and who to contact in an emergency.  Also before you tell a teacher or coach you need to think about whether you would be happy or not if they told other people about your haemophilia and let them know that they can or can’t tell anyone else.

Perhaps the purpose is to educate others about haemophilia. You could do a presentation in class to help people understand more about haemophilia and get the correct information. Again it is up to you if you say you have haemophilia or not in this situation as well.

Just as you have taken the step of posting your question on this website you could also attend a Haemophilia Foundation activity and ask others how they handle the issue of telling others. You can also seek out guidance from someone you trust such as a parent or your friendly social worker/psychologist or nurse at your HTC. They would be more than happy to discuss this issue with you and provide some information you could give to people you plan on telling or even help you practice what you might say and how to respond to questions.

So remember that it is your personal choice whether to tell people around you but make sure that you are making an informed choice that is that you have weighed up the pros and cons and consulted with others.

Answered by: Social Worker

Date last reviewed: 3 November 2021

Important Note: This information was developed by Haemophilia Foundation Australia for education and information purposes only and does not replace advice from a treating health professional. Always see your health care provider for assessment and advice about your individual health before taking action or relying on published information. This information may be printed or photocopied for educational purposes.

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