Talking About Your Bleeding Disorder: It Does Not Define You, but Honesty Can Help Keep You Safe
By Cathy Hulbert, LCSW, HoG Social Worker
Whether you are dating someone new or wondering which friends to tell, talking about your bleeding disorder might feel like an important moment of truth in your relationship with a significant other.
After all, you are not only sharing personal information which could come as a big surprise to the person to whom you are speaking, but it also might be an opportunity to learn something important about the person you are with. How someone reacts when you share such important information tells you something about that person, too. It is a give and take experience. That is why some people say they literally hold their breath when talking about their bleeding disorder for the first time, particularly in a dating relationship.
It’s important to remember that a person’s reaction, if negative, might just be based on poor information. If you have a bleeding disorder, you are probably familiar with such questions as, “Will you bleed to death if you get a cut?” Or, “Don’t people with hemophilia have to stay inside and avoid physical activity?”
Being patient enough to share facts and answer questions could really pay off if someone who is important to you does initially react fearfully to your bleeding disorder. If people think they understand bleeding disorders – but actually do not – ask them where they got their information. Maybe what they heard was at least partly true long ago, before factor was invented. We all know that the quality of life for young people with hemophilia, for example, has improved dramatically from the way it was generations ago. But old stereotypes can be slow to fade.
“I believe that whenever we are giving serious information to someone, timing is very important,” explained F.P., a Hemophilia of Georgia client who has hemophilia. “Often times our gut feeling may hint to the appropriate time. I would also suggest being ready to receive a different type of response from the one you would like to receive. Don't be offended by this. All people react slightly different to news that is unusual to them. If anything, an unusual response may be a good thing. It may serve as proof that the person you are dating takes the information seriously.”
And having a friend or significant other who does take it seriously, and wants to know the facts, can be important for your physical health as well as your emotional well-being. If you do need emergency medical care, you could be more at risk if the person who is with you knows nothing about your condition. Young kids usually have their parents or teachers nearby as advocates. But with independence comes the importance of making sure that others know to speak up for you as well, particularly if something like a car accident occurred.
The National Hemophilia Foundation has produced some excellent information about how to tell friends and significant others. There are other great resources we would like to share as well. Your HoG nurse, social worker, camp director or health educator can also offer you some feedback and a chance to air out your concerns before you have that important conversation.
Here are some great links, or give us a call!
The Centers for Disease Control and Prevention (CDC): https://www.youtube.com/watch?v=z3f8elOVOrU&sns=em
The National Hemophilia Foundation/Steps for Living: https://www.stepsforliving.hemophilia.org/step-up/dating-and-sex
The Hemophilia Handbook: https://www.hog.org/handbook/article/6/25/relationships-with-others
HemAware: https://www.hemaware.org/story/discussing-your-bleeding-disorder-your-boyfriend