What I Want My Friends to Know as Someone With a Congenital Heart Defect

Typically I don’t mention that whole heart condition thing unless I’m really close to the person. I found out the hard way that people sometimes treat you differently once they know. They act like you are weak and can’t do anything. Instead of asking if you need help they assume you do. Or they stop inviting you to things because they think you’d be too tired to go anyways.

I don’t look like I have a chronic condition. I’m not in a wheelchair, I don’t have any visible medical equipment. I do have a pacemaker but unless I’m wearing a shirt with a shorter neckline you wouldn’t know I’ve ever had heart surgery. I look perfectly healthy from the outside. This makes not telling people easier since most people wouldn’t guess I’m suffering from anything.

But it is hard when you have the energy to go out but people don’t invite you in the first place. Because either they know about the condition and assume you’d say no since you said no the last few times or you’ve flaked so many times that they stop asking you, thinking you’re not interested. Then you feel like you miss out on amazing adventures because you spend you evenings watching Netflix and writing.

In college I would usually go to bed around 9:00 or earlier if I didn’t have something with my sorority or a group project to complete. My roommates would go out around the time I went to bed. I missed out on some of the “college experience” because I couldn’t pull an all-nighter at school during finals week like all my friends did. If I did I would probably pass out the next day from lack of sleep; they could and still manage to be awake and alert during the 8:00 a.m. exam.

Here a few things I want others to do and know as someone with a chronic condition.

Treat me like a normal human being. Don’t baby me. Let me ask for help. Don’t assume and do the work for me. I like the accomplished feeling after I finish a challenging project.

Invite me. Even if nine out of 10 times I am too tired to go out. Still invite me because I want to feel included and valued. I want to go out when I feel great – not stay at home because you’ve made plans and didn’t tell me.

Surprise me with movie night or playing video games at my place when I say I’m too tired to go out because sometimes getting dressed and driving can be too much. But maybe call first.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via macniak.

Find this story helpful? Share it with someone you care about.

Related to Congenital Heart Defect/Disease

Baby lying on a sheet, with connections to an echocardiogram

Why I Have to Ask If Your Child Is Vaccinated

Hey new mom friend, Ashley here. Jackson’s mom — yes, that Jackson. The one with the trach, the one with the CHD (congenital heart disease), and the one your little one just invited over to play. Or maybe we set up the time to meet. Either way, I’m super excited to be getting together. Play [...]
Woman with blue sunhat on, water colored,with flying birds in the background.

How My Mother Taught Me to Live With My Chronic Illness

Some people receive a devastating diagnosis later in life, but for me, I received my diagnosis when I was born. I was unable to comprehend what my diagnosis meant and how it would alter the course of my life, but my mom could. She took the burden of helplessness, anxiety, and pain as I went [...]
jimmy kimmel at desk

To Jimmy Kimmel, From a Fellow Member of the 'CHD Club'

As many of you have seen, Jimmy Kimmel made headlines after his heartfelt monologue on Jimmy Kimmel Live. Jimmy shared the story of how his son Billy was recently diagnosed with Tetralogy of Fallot and pulmonary atresia and underwent open heart surgery shortly after birth. The Pediatric Congenital Heart Association would like to take a moment to extend [...]
jimmy kimmel

Everything I Want Billy Kimmel to Know, From a Man With Tetralogy of Fallot

As I watched Jimmy Kimmel give his heartfelt monologue about his son Billy’s birth, and the events preceding his diagnosis and first open heart surgery for Tetralogy of Fallot, his story brought me back to the many times I have heard a similar story from my parents. They still cannot tell it without choking up, [...]