HINSON: Counting your spoons with an invisible illness

Lizzie Hinson

There’s a great article on the internet about this thing called Spoon Theory by Christine Miserandino. Now imagine you were handed a fistful of spoons. Each spoon represents a decision to spend energy on something. While most people have unlimited spoons to use throughout the day, you’ve only been handed a fistful. You have a disability.

You go through your day making choices, each one costing you a spoon. Staying up until 3 a.m. studying last night for a bio test actually cost you a spoon today. Putting in the effort to look decent for class, which might cost a healthy person two minutes, will cost you a spoon. Sprinting from Wyatt to Wilson in 10 minutes will cost you a spoon. Deciding to stand in the Bowls line for 20 minutes will cost you a spoon. Soon enough, you’ve reached the end of the day, you have one spoon left, and you still haven’t eaten dinner, showered, or finished your HOD paper, and to be honest, your room could use some tidying up. Your friends want to hang out, but that’s not even close to an option tonight. You can only do one thing.

My name is Lizzie Hinson and I have a chronic disease. If you’re curious, it’s Ehlers-Danlos Syndrome, which can be best described simply as “my body sucks at holding itself together, and also sometimes just decides it hates me.” I have more than once dislocated a hip while rolling over in bed, and freshman year I dislocated my knee walking down the steps of a full Stevenson lecture hall, proceeding to tumble down the rest of them in front of everyone. On a bad day, my entire body hurts so much I can’t get out of bed. If you looked at me on an average day, there is a good chance you would have no idea that I am sick.

That last little bit is important. There is a whole range of disabilities that are aptly named invisible disabilities because, while you can’t see them, they are very real and very present in people’s lives. I am by no means the only person on this campus with an invisible disability. There are people who are struggling quietly all the time, whether mentally or physically. They don’t have to tell you if they don’t want to, and there’s a good chance that some of them won’t. It doesn’t really matter if they do, to be honest. It’s about having compassion for people in general.

There are people who are struggling quietly all the time, whether mentally or physically. They don’t have to tell you if they don’t want to, and there’s a good chance that some of them won’t.

Compassion, as defined by Google, is “sympathetic pity and concern for the sufferings or misfortunes of others.” This doesn’t mean telling the person in your life with a disability how “brave” they are, because that will probably annoy them. They are doing what they have to do to survive as a functioning member of society. It means understanding that you might not know what is going on when your friend is really insisting on Vandy Van-ing instead of walking, or taking the elevator up the three flights of stairs to your suite, even though, yes, it will take longer. It’s being okay with it if your friend has to cancel plans because they just are not feeling up to going out right now. It might even mean offering to meet them where they’re at.

I hope you never fully understand what it’s like to have to count spoons. I really do. But it is important for people to understand that they don’t understand. That they might not know what someone is going through, except that it sucks. That they should think before they judge. And that the best thing they can do to help is listen.

Lizzie Hinson is a junior in the Peabody College of Education and Human Development. She can be reached at elizabeth.hinson@vanderbilt.edu.