Five Things I Hate About My Bleeding Disorder (and One Thing I Sort of Really Like)

Author: Renée Embry

One of the worst things about my bleeding disorder is that during “that time of the month,” I have the worst bleeds ever. Sometimes my period is so bad that I can’t do much of anything, including going to school or work or hanging out with my friends. I’ve missed exams, project deadlines and friends’ birthdays because of heavy bleeding. While not all women with bleeding disorders have extremely heavy menstrual cycles, it is a problem almost all of us have at some point in our lives. It even becomes a way for us to help other women realize there may be a problem and that they should get tested to find out if they have a bleeding disorder.

My second-largest complaint about my bleeding disorder is what I call the “paper cut myth.” Although people may know a little about bleeding disorders, it for some reason shocks them that I am still alive after that last paper cut. I challenge every one of you who has a bleeding disorder to help educate the rest of society. Make it a point to teach one person a week about your disorder. That would be 52 people in a year by just one person. Think about the number of people we could reach if we all worked together! End the paper cut myth once and for all.

Third, remember the platelet disorders! I know people look at the numbers and we’re a small group, but that doesn’t mean we are any less important. There is not even a name for my platelet disorder, which really sucks when it comes to educating people about bleeding disorders. But I do the best I can, and I will not rest until platelet disorders rise again!

This next one goes out to all of my girls who’ve been told they can’t possibly have hemophilia because they’re female. The fourth thing that jives my bones in the wrong way about my bleeding disorder is having those conversations with other frustrated women about our medical professionals. It is becoming more and more common for me to meet a woman and discover she has a diagnosis of hemophilia—no, not one of the rare factors; I’m talking factors VIII and IX here.

It is wonderful you are getting the medical recognition you need, but then it all crumbles when you get a new doctor and you have to have the argument of whether or not you, as a woman, can also have hemophilia. I have had the argument with teachers and friends, but I can only lend my support for those of you out there having to deal with this. So this one goes out to you!

Lastly, the pesky side of being a bleeder comes down to having to factor my condition into a lot of my life and daily decision-making. Even with the new healthcare insurance reform, I still worry about coverage when I graduate with my bachelor of fine arts in sculpture. I also hope every day that I am not in any serious accident, because as a person with a platelet disorder, I don’t have a specific medicine that my doctors and I know works. This sits in the back of my mind all day long. I even freak out a little sometimes when I walk into the shop at school and see all the machines that could seriously injure even a non-bleeder. But I walk in, abide by all the safety precautions, wear my safety goggles, and take care to not put any limbs in harm’s way. It should be noted that I don’t let my disorder inhibit me, but I do allow it to make me even more careful than I need to be.

All complaints aside, there are one (or two or three) really cool, fun things about having a bleeding disorder. For starters, I never would have met my best friends, my family of bleeders that I am lucky enough to belong to, were it not for going to Camp Freedom (Tennessee’s camp for kids with bleeding disorders). And I would not be a camp counselor had I not gone to Camp Freedom. I would not be a part of the National Hemophilia Foundation’s National Youth Leadership Institute, were it not for my platelets not working.

I wouldn’t be who I am now, nor would I have the life experiences I’ve been lucky enough to collect. I also question whether I would have my love for art, because my first memories of truly loving art and wanting to do it forever began at Camp Freedom. I am only who I am today because of my platelet disorder, and I am so happy to be who I am. I absolutely love my life and who I am and would never change any part of my life or my history for anything in the world.