Things People With CHD's Want You To Know

Congenital Heart Defects, also known as CHD’s, occur in 1 out of every 100 live births. Despite the fact that CHD’s are so common, there isn’t much advocacy for them. The personal advocacy that is out there, however, mostly focuses on the perspective of the CHD patient’s family. Frankly, I hate those articles. As someone who has a CHD- six of them to be exact- I find these articles to be ridiculously frustrating. They very rarely talk about the actual child. It’s always the parents talking about themselves and how they “dealt” with their child’s diagnosis. Of course, these articles are important for other families, but they do nothing for those of us who actually suffer from CHD’s, and who are looking for things to share about ourselves. So I’ve taken it upon myself to create a list of things that actual CHD patients want you to know about OUR diagnosis. Naturally, I can’t talk for every one of us out there, but these are just some general ideas of things that are helpful to know about those of us with CHD’s.

1.      Every single diagnosis is different.

Sure, this seems like a relatively simple and obvious thing, but you’d be amazed at people’s ignorance. “But so-and-so has a heart problem too and they can run just fine.” That’s great for them, but I would prefer not feeling like my chest is about to explode after running for 2 minutes.

            It’s really an easy thing to understand. The term CHD covers a large range of possible defects and abnormalities within the heart. It’s near impossible for two CHD patients to have the exact same defect, even if they are technically the same. Little differences in the person’s genetics and body type can affect the defect itself in different ways, from exactly where in the heart the defect is to how large or severe it is.

2.      Just like every diagnosis is different, so is every treatment plan.

Some people have more complicated defects than others. I’ve seen kids go through multiple surgeries all before their first birthday. Other kids I know have never had to have a surgery. Some kids take 5 to 10 different pills, some only take 1 or 2, or even none. You wouldn’t treat a papercut the same way as a severed limb, so why would you treat any two CHD’s the same?

3.      Our treatment plans aren’t set in stone either.

I’ve lost track of how many times people have asked me if I needed a transplant or another surgery. I don’t know yet, maybe I will and maybe I won’t. Two surgeries seem to be enough for me right now, and my medications are good as well. Maybe I’ll have to go up again in my dosage, maybe it’ll go down. Who knows? I certainly don’t, and that’s often a very worrying and scary thought. But like with any sort of illness or disability, you just have to deal with the uncertainty of everything.

4.      When we say we are unable to do something, we mean it.

People with invisible illnesses or disabilities are often told that they’re just using it to get out of doing things that they don’t want to do. Trust me, I would love to be able to chase my 5-year-old cousin around the park without feeling winded soon after I start. Unfortunately, I can’t. I might only be 18, but I’ve lived with my defects all my life. I think that by now I know my body and its limitations.

            With CHD’s, you can’t really see physical symptoms until after the body has been pushed too far. Most of us don’t look like we’re sick. I’ve learned to show what I’m feeling in simple and easily recognizable ways, such as holding my chest whenever my heart rate spikes too high for comfort and my chest starts to ache. Unless we outwardly express it, you have no idea what we’re really feeling.

5.      Anything can set us off, and we all have our own triggers.

While not every CHD patient suffers from anxiety or guilt about their condition, a large part of us do. A harmless discussion in biology class about the structure of the heart can make us feel inferior or insecure about our own abnormalities. I remember nearly having a panic attack in health class while watching a video on cardiac arrest and CPR. Sometimes when people describe things such as chest pain and heart attack symptoms, it’s very easy for us to start to feel them, even if they aren’t really happening. Lots of us have conditioned ourselves to be hyper aware of these sorts of things, since we never know when we might have a problem or complication.

The simple act of writing this article makes me vaguely uneasy. Others have no problem talking about their CHD’s, and I normally don’t as well, but being so open about something so unique and personal can make anyone uncomfortable.

6.      Just because I don’t outwardly express symptoms doesn’t mean that I’m lying about them.

This ties into number 4, but I felt like this needed its own point as well, just to be sure that the message got across. I’m pretty lucky in the fact that I can pretty much exercise just as well as any other non-athletic person my age, within my limitations, of course. I can easily complete a set of 50 crunches, but I can’t do any sort of cardio for too long without feeling discomfort or pain. You can’t see my condition, but that doesn’t mean it isn’t there. There’s people with CHD’s who get winded just from walking across a room, but that doesn’t make my condition any less real or valid.

7.      We don’t mean to be snappy or rude, but it can get really tiring when you keep talking about our conditions.

This one is mostly geared towards our families. It’s not that we don’t you like talking about our conditions, but it’s not something that needs to constantly be brought up. Luckily I personally haven’t run into this problem too too often, but I have found myself on a number of occasions mentally willing my parents to just drop the subject and move on.

8.      We are more than our conditions.

This ties into the last point. It can be very frustrating when someone is talking about our conditions like they define us. How would you feel if the first thing that popped into someone’s head when they thought about you was “they’re sick.”, or “they’re that kid with the heart problem.”? It’s really not the ideal reaction for anyone.  We’re people too, and we don’t like our differences being the things people think of when they hear our names.

9.      Don’t be afraid or embarrassed to ask us about of conditions.

Despite what the last two points have said, most of us really don’t mind talking about our conditions and experiences. Because awareness for CHD’s is very small, we love to educate people about them. We promise not to get mad at you, as long as you don’t ask anything too personal (for example, asking us about our sex lives, or lack thereof, is pretty much a solid way to get us angry with you, even if we’re usually open about those kind of things.).

10.  There’s really not much you can do to help, and we’re sorry.

Because living with a CHD is such a personal and unique experience, there isn’t anything you can really do to make it better. Staying educated and being considerate of our feelings is a great way to show your support, but you can’t ever really “fix” or “cure” us. This is something we’re stuck with, but we’re happy that you’re here along with us for the ride. Thank you for that, really.