The Feisty Fontan

“You sure don’t look sick.” “You would never know that something was wrong with you just by looking at you.” “Well, at least you look healthy.”

If I had a nickel for every time I have heard one of the above sentences, I would probably have enough money to pay for an open-heart surgery out of pocket. I  guesstimate that about 98% of the time that someone says this to me they are meaning it as a compliment. Sincere or not, this comment drives me crazy! My inner smart ass wants to say “What does sick look like? Do I need to have a bald head? If I show you my large chest scar, would I look sick then?”

A few weeks before I ended up in the hospital I posted the below picture on Facebook. This picture is a moment in time. It doesn’t show that right before this picture was taken I had spent over 20 minutes walking the 100 yards from the car to the shoreline because I had to keep stopping to catch my breath. It doesn’t show all the pictures that I snapped before this one that I didn’t post because I felt like my lips were still blue from the walk. It doesn’t show that after I got home from the beach, I spent the rest of the day in bed because an hour at the beach completely and totally wore me out.

And while my face may have not “looked sick” there were parts of me that screamed out that something was wrong. I have mentioned before about how bad my legs and feet were swollen. As one of my doctors phrased it, my “heart failure was written all over my feet.” The rest of me may have looked “fine,” but there were visual cues of how sick I was.

Plus, not “looking sick” is kind of a curse. Not looking sick makes it harder for people to understand the severity of my heart defect and my health. Not looking sick makes it hard to explain to a boss why you need to take a whole day off to travel three hours a way to see a specialized cardiologist. Not looking sick makes it hard to explain to new friends why you are canceling plans. Not looking sick makes it hard to explain to your too-young-to-understand niece why you need a break from playing with her. Not looking sick gets you dirty looks when you sit on the accessibility platform at a music festival. Not looking sick makes me nervous to apply for and then use a handicap parking permit.

Even yesterday, as I was doing the six-minute walk test to qualify for at home oxygen, a nurse who was passing by said, “You look way healthier that most people who do this test.” This nurse had no idea that I had just spent an hour talking to two different doctors about disability paperwork, liver biopsies, and open-heart surgery. She had no idea that I was just told that I need to focus on getting healthy enough to even be considered a candidate for a Fontan revision. As she passed by walking up and down that hospital hallway and made her offhand comment, she had no idea that I was going to be leaving there with a prescription for at home oxygen.

I am confident that every person who has a medical condition has heard these comments and we will probably keep hearing them up until the point that we do start to “look sick.” My ask to those of you that are reading this is, if you find yourself talking to someone with a heart defect or an autoimmune disorder or any other “invisible” illness, then please think before you let loose one of these comments. While we may not look sick, we also may not look like a feisty, smart-assed big mouth and you may not be prepared for the “sick” burn we respond with.