The Things You Thought You Knew Before You Got Sick

Michael McIntyre is a British comedian, who has a hilarious sketch on people who aren’t parents. Those easy-breezy folks who assume that life won’t change that much after having children. Surely, how hard can it be? His response is “You have no idea.”

Chronic illness is like that. You think you know, but you don’t.

You thought you knew about healthcare — how the hospitals and offices worked. How a physician would sit with you and listen to your story and try to put the pieces together. You didn’t know how many papers would get lost, how often the consultant wouldn’t know why you were there, the particular tunnel vision of specialists, how late appointments would begin, or how short a 15-minute time slot really is.

You thought you knew who was in your community, the people who were your support system. But some of your oldest connections are nowhere to be seen, and meals are delivered by unfamiliar neighbors who want to help in a tangible way. People who you grew up with keep saying, “You’ve got this! You’re so strong!” while you fall apart. People who you don’t regularly cross paths with remember and check in with you again, and again.

You thought you knew that surgeries get easier each time. But you still don’t know how to spend the hours in the hospital. Feeling tied to the waiting room, afraid to leave “just in case.” How many books can you stare at and not actually read? How many trips to the vending machine can you make? Surely, next time will be easier. Next time I will be ready.

You thought you knew that you loved your family. You didn’t know that love is organizing medical documents chronologically so that your story is easier to tell. Love is ensuring the house will be taken care of while you are away so they can recover without worry. Love is staying apart post-op when you are sick because the risk is just too big. Love is changing dressings, holding vomit bags, and counting pills and coordinating endless follow-up appointments when your partner can’t. In sickness and in health. You thought you knew.

You thought you knew that your family appreciated you, but you didn’t know until you helped them take first steps. Sat mid-hallway when it was just too long to walk. Brought them ice chips that melted almost immediately. Peeled back foil on juice cups. Spooned food, bite by very slow bite. Helped them to the bathroom. Helped them take a shower. Maybe they said “thank you,” maybe they didn’t. But you would do it again.

You thought you knew what fresh air smelled like or the warmth of the sun or a crisp breeze. How awesome a Netflix marathon is, or the comfort of silence shared. You didn’t know how amazing they could be until you shared them with someone who isn’t always there.

You know that this life is a bizarre one, and maybe you still aren’t sure why you’ve been dealt this particular hand. I know I’m not. When I see you walking the halls, with an old battered word search book, in the kitchenette at 2 a.m., wearing the same clothes days in a row — I will see you and I will smile, because I’ll know you’ll understand too.