It sounds crazy right? Well I was at my first pacemaker clinic appointment and I was talking to the lady about my first three weeks of having it and that I still wasn’t completely confident that I’d made the right decision. She responded (along with many others) “you’re quite young to have a pacemaker, but I’m sure you’ll reap the benifits of it soon enough”. In my last ‘rant’ (still I rise) I talked about how young adults with congenital heart disease have all different types of limitations and that we shouldn’t bind ourselves with them or by them. I’ve been thinking about that blog post a lot, and even more so the Facebook post that inspired it. I thought about it a bit, and when the pacemaker nurse and I were talking it hit me; CHD is like a spectrum disorder. Before the DSM-5 (Diagnostic and statistical manual of mental health disorders) there was Autism and Asperger’s. If you had Aspergers that’s all you had, there was no measuring it, there was no “mild” case of Aspergers. When the DSM-5 came out they went away with the term Asperger’s as it’s own separate syndrome and now it’s considered a mild form of Autism on the Autism spectrum. Many people still use the term Asperger’s because society has an idea that there is a difference between Autism and Asperger Syndrome. In the mental health world it’s not it’s own disease now, and it too has many forms it can present itself in.
When this thought hit me in the pacemaker clinic it really did click. I know that CHD itself is an umbrella that incompasses many diseases and disorders that all have their own name and their own problems physically. But what if like many mental illnesses are, we treat it like it’s on a spectrum. Some CHD patients never have to have surgery, while others will be tied down to oxygen and restrictions their entire lives. We are not meant to put CHD in a box, tape it up and ship it as a “welcome package”, we need to carefully select what we put in each box, and how much more one box will have in it compared to another. With this I’m not saying some CHDers are “less” of a warrior than others; but some warriors need a little extra help.
If we as a community were to see these differences when it comes to the emotional and health of not only the patient but the families in the long run I think there would a lot less anguish. As a young adult with CHD I think about what resources I wish were available when I was younger for my mom and myself; but I realized it would probably make me more worried and bitter than accepted. It’s great that we have the internet to connect us with people that are “just like us” and parents “who are all going through the same thing” but that’s not reality, at least not completely. I spoke on this in my last blog about the fine line between shouldn’t do and can’t do; but how do you explain to a child/teen who has CHD that they can’t do something while their friend (who also has CHD) can? You can’t say “because you have congenital heart disease”… what kind of argument is that? This scenario came around very often when I went to Boggy Creek Gang Camp (camp for kids with illnesses; I went to heart week) as a child/teen. There was no search engine that set limitations for us, we found them out ourselves and there were some achievements and bittersweet realizations that came from finding those things out on our own. It was really great because we got to talk to each other about our defeats and our accomplishments; while learning from one another. I think with social media how it is we lose some of that connection, some of that honesty, and some of that personal defeat we feel.
I know I’m not the only one who has said something online or even in a text that I would never tell someone face to face; would you tell a parent not to let their kid do XYZ because your kid can’t face to face? I think it’s great that we as a CHD community can share ideas and inspiration that gets us through a bad day and small achievements that seem like milestones. The internet has allowed us to box up CHD though, it’s in a little cute box that you can “like” and “share” while not really knowing what the box has inside it. If we treat every case separately and everyone with CHD as an individual I don’t think that we would have so many teens/young adults/parents questioning if they are doing the right thing for themselves or their child. Every single patient with CHD has a differently complexity of problems they deal with….EVERY SINGLE ONE…..so before you tell a mom of a sick child they should treat them with this or try this why don’t you just listen and learn?
In a generalized way many people who post about their problems on social media aren’t really looking for someone to reply with an answer; many people just want an outlet to vent to, someone who won’t judge the decisions they’ve made thus far, and if need be give them stories of personal experience. This is especially true for the parents/caregivers and the patients that have CHD. We are not looking for you to tell us our decision was wrong and we should have done this, we are not looking for you to make us feel more broken because we feel a certain way, and we are not looking for people to be our doctors (we already have plenty of those….trust us). We are looking for compassion, communication and sometimes personal accounts. But please treat us like an individual; not just a patient with HLHS, not just a patient with AVSD, not just a patient with CHD and not just a sick kid/teen/adult. We all are on a spectrum where some have CHD more severe than others and we all deserve a chance to learn about where we fall in that spectrum as an individual and how that impacts us as a person.
“The greatest gift you can give to yourself is embracing all that you are unapologetically. The center of this beautiful embrace is individuality.” -Unknown
Live, Laugh, Love…..Always,
I know this is a little redundant of the last post but I wanted to go into more detail about certain things ^_^