A question for the Hemophilia A Community

Thinking about how other people talk about your or your loved one’s condition, what are some words or perceptions that make you cringe? What do you wish people wouldn’t say?

Answers from the Community

I think the cringiest thing for me is when people ask, “Will you die from a paper cut?” That’s always been a commonly asked question, even now as I’m 23 years old, people still ask me, that one’s brought up. Another word that I don’t like is disease, because it’s not really a disease, it’s a bleeding disorder, so those are the two things that kind of get under my skin when someone asks that question or kind of mispronounces what I have.

One of the worst things that people ever said specifically about me being disabled is crippled. Cannot stand the word crippled, it drives me nuts when someone uses the word crippled to define me. The hemophilia, everyone’s afraid that I’m going to fall or get hurt or something and have the longterm bleed. That gets on my nerves. I do fall, I do have longterm bleeds, not a big deal though because I know that I am going to fall so it’s not as stressor anymore. People sometimes are very standoffish when they first meet a hemophiliac and learn that you’re a hemophilic until they learn that it is manageable and controlled.

I think one of the misconceptions that makes me cringe is, you can ask any hemophilic this, but papercut and, like, “Aw, you get some tiny little cut and you’re going to die?” Or “Oh, every bruise is going to kill you?” I know it comes from a place of ignorance, but yeah, it’s cringey. I guess I wish that … I wish people would just ask questions. You know? Whether it be my hemophilia or any other really subject where they or I have ignorance. I wish it was a dialogue that consisted of inquiry instead of assumptions that have no basis, truly. Yeah, I wish people would ask questions.

I’m not sure of a specific word, but perceptions, most people think when they hear hemophilia, they think that “Oh my goodness, he’s going to bleed to death if he pricks his finger.” And that is not the case. And I’m constantly describing to people that, if he cuts himself and I cut myself, he’s not going to bleed any faster than I will, or they will. It’s just, we will stop and he will not without medication. So I think that’s the biggest perception. Is people think that he’s just going to start bleeding and it’s never-ending.

Words would be things like fragile, be careful, things like that, basically, because other than the fact that I think I know at this point what my capabilities or limitations are, it’s not fun. Not being able to keep up with other people just because of something like that that’s out of your control. Yeah, those would be the two biggest.

When my child was younger, there were lots of things that people would say that would make me cringe or would upset me because there’s lots of things that he can’t do, but there’s also lots of things that he can do. So that would be, I would have to say would be my biggest, I guess, worry.

I hate when people say, “Oh, so he’s not normal.” He is normal. This is his normal.

One of the biggest things, misconceptions, is the paper cut theory. When I tell them my blood doesn’t clot, people ask, “So if you get a paper cut, will you die?” And just not understanding how it works, which is no fault of theirs. Unless you seek it out, there’s not a lot of general information about hemophilia out there. But we, hemophiliacs, don’t get hurt any easier than anyone else. And they don’t bleed any faster than anyone else. We just bleed longer if we don’t take our medicine. One of the other big issues that I’ve had is, especially with my ankle issues, from day to day, some days I can walk just fine. Other days I had to call in off work. And people just don’t understand. They’re like, “Well, you were walking just fine yesterday.” Or I go in the next day and they’re like, “Well, you’re walking just fine today. How come you had to call off yesterday?” Because they just don’t understand how bleeds work, and the severity of them. But yeah, this is the biggest misconception.

One of the biggest misconceptions with hemophilia is a lot of people have heard of the word, although they truly believe that if I were to get a scratch, I would just completely bleed out and die from like the smallest cuts possible. Although I understand why they believe that, they don’t understand that hemophilia is much more complex. I mean, obviously, staying away from lacerations is important, but it’s also degenerative to the joints, which is the biggest issue. The one thing that really does bother me is when people think I’m faking an injury or exaggerating the amount of pain that I’m in because they don’t physically see the pain, they just see me hurting and they think I’m doing it for sympathy or something like that.

What definitely makes me cringe is when someone calls it an illness. My child is not ill, he’s as healthy as they come. You look at him and nobody would know that there’s anything different about him. He is incredibly healthy. That is something that definitely rubs me the wrong way. It makes me cringe. I also don’t like the term “disorder” because it also implies something negative. Also, we don’t call it medication, we call it factor, we call it what it is. Medication implies sickness and again, my son is not sick. I also don’t like calling him a hemophiliac or a bleeder. I work in the mental health field for a long time, and I never liked calling someone a schizophrenic or identifying them by their condition. He is a person with hemophilia. Hemophilia is not what defines him. So I do not call him a hemophiliac. I know plenty of people in the community do, but that is what is important to me. I wish people wouldn’t say that. I wish people…When I tell them about it, I wish they wouldn’t say, “I’m sorry,” because that also implies that…I don’t know. I don’t like that. But yeah, mainly the illness, the disorder or sickness. Chronic illness is another one. Yes, it’s a chronic condition, but it’s not an illness.

There aren’t any words that I can think of.

Then my biggest thing is when people say they would never do that or they don’t understand or, and it’s normally coming from loved ones close to me. That’s probably the biggest thing. The hardest thing to hear is when they say they would never do that, sometimes it feels like you’re on an island and you don’t have no support. I would rather hear them say, “Hey, whatever it takes, if it’s a class to take, we’ll take it because we’re here to support you.” I don’t feel like I’ve ever gotten that. And besides my wife and myself, that’s all they have. And that’s hard.

Well, I think the biggest thing that irks me is a lot of times someone will say things about hemophilia and act like they know exactly what’s going on with it when really they have very little knowledge. I try not to hold it against them in a way, but it is very difficult sometimes when you hear somebody that they think they know more than they actually do. Such as sometimes they would say something about a girl having hemophilia, but that’s not the case. A girl cannot be a hemophiliac unless her father’s a hemophiliac and her mother’s a carrier. So just things like that do irk me. Thank you.

Some things I wish they wouldn’t say is, “Oh, that’s so scary,” in front of my kids because it makes them think, “Oh, is this more serious than what I’ve been taught?” Then the other thing is, “Don’t you worry about them constantly?” Well, yeah, of course, we do, but we can’t live like that. We try to make sure they know that we are confident in the treatment and the care for them, and they’re happy and can be normal kids.

I don’t really worry about what other people say. None of that really bothers me. Some of my friends say, “Oh, bleed on me.” Or, “Oh, you’ll bruise.” Or stuff like that. I know there just horsing around, having fun. None of us generally take anything too serious.

First of all, they don’t know. Not everybody knows about my condition, and when they know, they just want to hear the whole story. I just feel very uncomfortable telling them that part of my life, because it’s personal. The ones that know, they just sometimes don’t include me because they don’t want to take risks or they don’t want to put me at risk. So I don’t know if that is their fault, however, what bothers me most is that even doctors or nurses don’t know what a hemophiliac is. So I have to explain to them what is it. I feel being the doctor instead of them.

I don’t think that anyone with hemophilia should be looked at differently. I think we are all equal as human beings. But at the same time that with this condition, you have to be alert and focused and make sure that you are paying attention because sometimes he falls off track a little bit, and I got to make sure he takes his Factor. I make sure that his family and his friends and his doctor and his health representative are aware of everything that’s going on. I don’t think anyone has really had a negative… It’s never been a negative impact before or anything like that. It’s just time-consuming to do the Factor. But a lot of his friends and family don’t sit around him when he does his Factor. It’s just me. So there’s not anybody really judgmental of him or his disease, but they do understand the severity of it since he is a severe type A.