Opinion: Dealing with an invisible sickness

Rilee Malloy | Staff Writer

“But you don’t look like you’re sick.”

You’re right, I don’t look sick. From the outside looking in, you would never know that something is wrong. But I wake every morning knowing that I am chronically ill and I won’t be getting better.

When I was nine, I was hit with a diagnosis of Ehlers Danlos Syndrome, Fibromyalgia, and Postural Orthostatic Tachycardia Syndrome. They manifested themselves as frequent loss of consciousness and fragile joints, as well as chronic fatigue and pain. 

Growing up I was always tired, but it was always  “everyone gets tired, that doesn’t mean you’re sick.” I had no idea how to respond when people told me I didn’t look sick, I mean they were right. Nobody could see the pain I was experiencing; EDS, Fibromyalgia, and POTS are all invisible illnesses. 

Nobody would have batted an eye if I had a cast on my arm, that was visible.

Christine Miserandino put it into words that I didn’t even know existed; she described what it’s like living with a chronic illness. I quickly identified with these words, known as the spoon theory, as they gave me the power to not only tell my experiences but put others in my shoes. 

Spoons are a reference to energy — a healthy person has a nearly unlimited number of spoons, but a chronically ill person has a finite number, all depending on various factors such as stress level, amount of sleep, and pain level.

On a typical day you wake up with 12 spoons. Getting out of bed doesn’t take much energy, but when it comes with bone cracks and muscle aches, it takes a spoon.

Now you have 11.

You continue through your morning routine; brushing your teeth, getting dressed, packing your bag, all of that takes a spoon. The drive to school and the walk in the building takes another spoon as well. You’re left with 9 spoons.

Your battery is at 75% and the first bell hasn’t even started.

The amount of spoons used at school varies depending on what you do. With the length of our bells this year if the class is more relaxed it takes about two spoons. If it’s a more intense class such as AP Stats where the material is challenging, that could take anywhere from three to four spoons. Eating lunch with your friends takes a spoon–the fast moving, loud pace of the cafeteria shows no mercy on your energy.

The typical school day leaves you with one spoon.

You have options now. You can use your last spoon to go to practice, but that means you don’t perform at 100% and when you go home you’re done for the rest of the day. Or you can use your last spoon to go home and do homework. Or you can tap into your already limited spoons for tomorrow and do it all.

It becomes a cycle of running out of spoons, tapping into tomorrow’s spoons, then doing the same thing the next day and the next and the next until it’s the weekend and you crash.

So yes, I don’t look like I’m sick, but I am, and every inch of my body feels that every second of every single day.

Next time you are about to tell someone that they don’t look like they are sick, think. It is extremely ableist to invalidate someone’s feelings about their own disability based solely on the way they look. Everybody has their own struggles and nobody is expected to understand someone’s personal battle. While we may not understand it is our job as human beings to step back and realize our own misunderstanding and work towards validating each other.