Invisible illnesses are the worst. Of all the reasons they suck, the one that's most painful is the lack of validation from others. When you have a physical marker of your illness, regardless of how severe it is, people validate your condition by asking how you are, or what happened to you. Alternatively, when an illness isn't easily seen or manifested on your physical body, people just assume you're healthy and might not think further about what's going on in your life.
Let me break it down with two small examples:
When you break your leg and get a cast, everyone might sign it, hold doors for you, get your lunch, and ask what happened in sympathetic voices. People, you don't know become instant friends when they see you hobbling across a lawn, or trying to open a door. They see someone in distress and come running to ease your burden because that's what we do when we see someone struggling.
When you're suffering from an invisible illness like depression, anxiety, eating disorders, or other non-visible physical ailments, you don't get the same level of support from everyone, barring close friends or family who might know what's going on. When you walk down the street, you could be in an immense amount of pain, but no one acknowledges you, no one shows you sympathy. Each step hurts, each thought buries you deeper in sadness. Unfortunately, no one knows and you might feel very alone. To make matters worse, people often have a hard time acknowledging the existence of something they cannot see. This is why so many people downplay the severity of depression, claiming the person is just "having a bad day." In their defense, healthy people can have a hard time understanding other people's hidden pain. If you're not experiencing it yourself, how could you truly know the isolation, fear, loneliness, and sadness that accompanies being sick in ways others cannot see?
In 2003, Christine Miserandino coined the term "Spoon Theory" in an effort to help others understand hidden pain. The general idea is that a spoon is a metric for how much energy a person has throughout the day. Healthy people have infinite numbers of spoons per day, so they can do all the things they want to do. Sick people have a limited number of spoons per day, so they have to conserve them in order to do basic tasks. This theory applies to all sick people, whether or not their pain is invisible. However, people with visible ailments are already assumed by others to have fewer spoons, so they aren't asked to do as much. If your pain isn't visible, you already have a limited number of spoons, but nobody knows this and expects you to perform as though you had infinite spoons. The spoon theory applies to physical and mental illnesses, and I would like to highlight one example for each.
I've been personally struggling with an eating disorder for about four years. Eating disorders, depending on the severity, can completely destroy your life. One of the hardest parts of having an eating disorder is that it's often unrecognizable to the average person. Eating disorders consume your life. They dictate your social schedule down to the last second. You're scared to eat around your friends, so you don't go out to dinner or to parties. You're scared to mess up your eating schedule, so you buy the same foods over and over again. The scary part is that you don't have to look undernourished or emaciated to have anorexia or bulimia. You may look completely normal to your peers. Red flags of anorexia or bulimia can be hard to spot, and are usually discovered only when the person is ready to heal or when they become so unhealthy they are forced into a hospital.
When I was in the depths of my eating disorder, I woke up, already exhausted before even facing the day. I only had five or six spoons for the day, not infinite spoons. I spent my limited number of spoons on getting out of bed, counting calories, and doing my homework. When my friends were hanging out, going to parties, having sleepovers, or going to concerts, I sat in my room alone, consumed by destructive self-talk. Whenever I told my friends I was busy, I received the following laments:
"You look fine."
"Come on, it's only an hour."
"You never go out anymore!"
These only made me feel worse. They didn't understand that I had zero spoons left. There was only enough room in my life for me and my eating disorder. No one knew about it, so no one could sympathize or offer a helping hand. I was often playfully criticized for my obvious introversion. Even though it was never with malicious intent, the teasing only made me feel worse about myself, reminding me that I was sick and helpless. I was desperately searching for someone who could help, someone who understood that I was living life with limited spoons.
The second example involves Sara, a close friend of mine from high school. During her sophomore year at school, she fell off a horse and injured her ankle badly. Months and months went by and it seemed that not only was her ankle having trouble healing, but the rest of her body as well. She started noticing aches and pains in random places, muscle fatigue, and sensitivity to food. After almost a year, she was diagnosed with AMPS, which stands for Amplified Musculoskeletal Pain Syndrome. Living with AMPS is living your life in almost constant pain.
She dealt with severe ankle and stomach pain during the rest of her high school career and is now continuing to deal with it throughout college. The funny thing is that you would never guess Sara is struggling with this disease. She's an excellent student, a caring and mindful friend, and just an overall kind person. Seeing her walking around, you might notice a small limp and think she twisted her ankle, but in reality, she's constantly trying to lessen the pain in her ankles. I too saw that Sara was having to limit herself socially. Numerous hospital visits, doctors appointments, and physical therapy saw to it that she missed classes, formal events, and other social gatherings.
Again, you would never guess that she is dealing with constant pain, or that she's been hospitalized because of her condition. Her strength is enormous, and she puts on a smile every day to show the world that she's doing okay. This is just one of the many reasons why I admire so deeply. She has taught me how to be strong when facing a lack of support from your peers. She has also shown me that people are never trying to be intentionally malicious, so you can't blame them for not acknowledging what they can't see.
I harbor no anger or frustration towards the lack of understanding of invisible illnesses, but I do want to help spread the word that they certainly exist and are extremely prevalent. I want to encourage people to take the time to understand why people are the way they are, or what's causing them to act irregularly. Honestly, just sitting down and having a conversation with someone you're concerned about is a great first step. If you're healthy, you are privileged to have infinite spoons, and it's your job to look out for those with limited spoons. Remember, just because you can't see the pain does not mean it doesn't exist.
