A question for the Pulmonary Arterial Hypertension 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

When I tell someone that I have pulmonary hypertension, all they hear is hypertension and immediately say, “Oh, my uncle has that or, “Oh, my mother has that.” All they’re hearing is hypertension and not hearing pulmonary hypertension, which is high lung pressure. I wish they would listen. But I do have cards that I give to them that explain a bit about pulmonary hypertension, as well as the secret analogy.

One of the things that I really hate is when people say, “Oh, at least it’s not cancer.” Sometimes it would be easier to treat cancer because you can… there’s a very well-defined path. This is something that is not as well-researched, and people think I look fine, but they don’t understand what I’m feeling.

The biggest one for me, that I get is the, “Well, you don’t look sick.”

Well, the misconceptions about pulmonary arterial hypertension is, oh, it’s just high blood pressure. It’s like you just take a pill for it and you’ll be fine and all is well. It’s like high blood pressure. They don’t realize that it’s a progressive disease, a fatal disease and that is probably it. I guess it’s them not really understanding what it is. So I do go into it and educate them a little bit and talk about my treatments and what I do and my, I don’t want to say disabilities, but things that still get me out of breath or this or that. Some of my patients, I’ll talk to them about it if I need a little break or something while I’m working on them. I’m a dental hygienist. So sometimes I just need to pull the mask off and step back, which I’ve always been wearing a mask before the COVID. But I’ve been a dental hygienist for 23 years. I know a lot of my patients very well. But I don’t talk to them a lot about it because of that, because of all the misconceptions. But the few that I do, I go in depth and tell them a little bit more about it and the treatments.

I don’t really have anything. I know that some people just automatically assume it’s a death sentence. Most people that I talked about it initially don’t know what it is and then they have to do research. I think most people just don’t know about it, so they don’t really have anything to say that would make me cringe because they don’t know enough about it.

The perception that is the hardest to deal with is that “you look just fine.” If I don’t have oxygen on, even when I have oxygen on, I look like “regular, healthy, fit adult.” And that is extremely hard to deal with because you have really severe limitations, but no one can see them, which people almost doubt that you actually have something so serious.

Some of the things that make me cringe is when people say, “Well, can’t you just take a pill?” “Isn’t there a pill for that?” They sometimes get me confused with high blood pressure patients, unless I have high blood pressure. And sometimes I just get tired of explaining over and over and over again what I have. They don’t understand why I’m wearing a pump. “Why do you have to have that thing on your side?” They kind of roll their eyes sometimes when I am in pain or I’m slow. And sometimes I wish they would be just a little bit more understanding and say, “Oh, well, you’re having a bad day today. Okay. We’ll come back. We’ll do this later.”

Some people say, “That must suck.” That really gets under my skin, because yeah, it sucks, but you don’t let it bring you down. And I guess when people say, “Oh you’re disabled,” and try to minimize what you can do. But if they would just give you a chance you could do it.

This is a hard question, but some perceptions, I don’t like the fact that people will look at me and they’ll think that I was a former smoker and that’s why I’m on oxygen, or I’m overweight, that’s why I’m on oxygen, and a lot of times I’ve been berated getting out of a car in just a disabled person spot because they think I’m being lazy. This disease is very invisible, and without my oxygen, before I was actually on the oxygen, it was very difficult, but now with the oxygen it’s a little bit easier, but I think one thing that bothers me most is people go, “Just breathe.” Well, that’s not so easy. That’s about probably the thing that irks me the most because I’m trying, I just need time.

I really haven’t had any negative responses as far as my disease, so I don’t know that I can really give you an accurate answer on that.

Really, there has been nothing that I can think of. As I say, all of my friends and family have been super, super supportive. One thing that does always make me smile, I’ve been wearing a mask, face covering, whatever you want to call it, since the surgery for about 20 months now, and I was always used to people looking at me very strangely when I was out and about in supermarkets or whatever when I used to wear the mask. And I’ve even had people turn around and walk the other way. And now it’s quite amusing to me that the vast majority of people are now wearing masks. And for people to say, “Oh, I’m not going to wear one. It doesn’t do anything.” That really does tend to annoy me, to be truthful. I think it’s a very selfish outlook and attitude, and I wish more people would wear the face coverings, because I think we could stop the disease a lot quicker.

The biggest one saying that makes me cringe is “You don’t look sick,” because it definitely feels like it minimalizes my condition. And other times when I’m with my loved ones and we’re walking around and I’m extremely out of breath, it drives me crazy when they have to stop and gasp and ask me if I’m okay, as if I’m dying. It’s embarrassing, especially in public.

I don’t really hear people talk much about pulmonary hypertension. I hear them talk mostly… I just hear them talk about hypertension more, which is kind of different. But I wish people, what do I wish people wouldn’t say? I’ve never had anyone say anything about pulmonary hypertension. They really don’t know what it is when I explain it to them. But I just provide education at that point.

It’s not what people wouldn’t say, because people usually don’t say anything. And that kind of hurts when you tell him what disease you have or what you’re going through, and they don’t have any questions for you. And you just seem to like, “Okay, if you say so. If you have that disease you do.” Because it’s just not well known. They think hypertension and they go, you have hypertension when your blood pressure’s high. So it’s not really bad. But also that people don’t understand when I’m tired or whatever, they think I’m lazy. Or if I can’t go to a party or friends get together, they may think it’s just because I’m using that as an excuse. But that would be my cringe worthy things.

So my condition, unless you’re wearing oxygen or they can see your central line, they don’t really know that you’re sick because you don’t look sick, as per se. You may not look beautiful, but you don’t look sick. And the thing that I hate the most is that if I have my oxygen on, I’m 44 years old, and people are always like, “You’re too young for that.” Diseases do not know any age. They don’t care how old you are. Kids get sick, adults get sick, the elderly get sick. There’s no age stipulation on it. I would prefer that you just don’t stare at me. And if you want to ask a genuine question, that would be great. If you want to ask me about my pump, if you want to ask me about my oxygen because you’re interested in maybe a family member or you have the same thing and you want to know if yours is better than mine or if mine is better than yours, I’m all for that. But to ask me things like, “How did you get that? Or what are you going to do with that? Or why do you have to wear oxygen?” Sometimes the way that people put things is just not real nice.