To the people that can’t see me: understanding invisible illness

6025311011_fd55d6aa1b_bHi!

For those of you who don’t know, my name is Becky. I am 15 years old. I’m a freshman in high school. I play soccer. I like to write. And eat Chipotle. 

When people look at me, they see a teenager. A student. A friend. A sister. A daughter. A cousin. That annoying person who color codes their history notes. (Don’t worry; that was just a phase). 

But, none of those people really see me

Our eyes can only see what’s on the outside. But what if I told you my outside’s were a lie? An illusion? Spoiler alert: They are. 

On the outside, I blend in. I look “normal.” But the smile you see on my face is deceiving. 

Because on the inside, I’m a hot mess. 

I live with a medical condition called Crohn’s disease. It is an invisible illness that has no cure. And it sucks. It really, really, sucks. 

But the worst part about it isn’t all of the pills, and shots, and doctor’s appointments. It isn’t the fact that I can’t eat popcorn. It isn’t even the symptoms I feel. 

The worst part about my condition is that it’s invisible. It’s impossible to tell that I’m sick when you look at me. 

It probably seems like a great thing. After all, if nobody can see my illness, they won’t judge me for it. I’ll be able to hide from it. Act like it isn’t there. 

But it doesn’t work like that. I can’t ignore a disease that literally tried to destroy me. I can’t ignore a disease I’ll have for the rest of my life. And being invisible only makes it more difficult for people to understand me. It’s hard to explain that you feel sick when you look healthy. And personally, it’s even harder to validate that feeling. 

Here’s an example:

Last week, my friends and I wanted to do something fun to celebrate the end of final exams. We all bought tickets to go somewhere fun, and I couldn’t wait. But on the day we had all planned to go, I woke up and I knew it I wasn’t going to make it. So I texted my friends to say I didn’t feel well. And to make sure they didn’t think I had contaminated them all, I added that I wasn’t “actually sick,” but just really tired.

But I was “actually sick.” I wasn’t “just” tired. I felt like I had been hit by a truck. My entire body hurt. I didn’t leave my room until 2 in the afternoon. But I looked fine.  So to everyone else, the real me was invisible. 

And this made me mad. I was mad because I felt like I needed to act like everything was fine on the inside too. I had to text my friends that I was “just tired; not really sick” to get them to understand why, A, I ditched them last minute, and B, why I wouldn’t infect them all.

Yes, I let the real me be invisible. But it was because I didn’t have a choice. The real me, Crohn’s disease and all, is invisible. And when people can’t see something, they have a hard time believing it. Understanding it. Validating it. 

Sure, I could do things to make my illness more “visible.” I could send all my friends an article about my disease. I could explain to people what I mean when I say I’m sick. I could do a lot of things to prove my disease.

But the point that I’m trying to make is that I shouldn’t have to do any of that. I shouldn’t have to prove to the world that I’m sick just because I don’t look like it. When someone say’s they have the flu, nobody asks for proof. Nobody question’s if they’re “really” sick. So why should I, or anyone else with an invisible illness have to? 

I know it doesn’t make sense how a person can look so good and feel so awful. I know it doesn’t make sense to feel one way one minute and different the next. I know it doesn’t make sense for someone to have a disease that will never go away even though they take medicine. But that is my reality. That is a lot of people’s reality. 

If you think about it, everyone is fighting their own battles. Some are visible, and some are not. But no matter what, they’re all still battles, and we all still have to fight, whether or not other people notice. And when you are fighting a battle that no one else can see, it becomes hard to justify that fight. You feel misunderstood. You feel weak. You feel like you have to prove that your battle is really there. 

thinking-turtle-vector-filesBut why?

Why do people only believe what they can see when there is so much more truth in what they can’t? 

It’s not because they don’t care. It’s not because they don’t want to understand. It’s because they don’t know how. And when people don’t know how to do something, they do one of two things. They either avoid it or learn how. 

And when it comes to understanding invisible illnesses, most people tend to avoid understanding people like me. 

Yes, invisible illnesses are complicated. They are complicated to live with, and they are complicated to understand.

But even though you can’t see the real me doesn’t mean you can’t show compassion.  

So, a whole lot of blabbering later, here is what I have to say to the people that can’t see me:

Number one: Show that you care in a helpful way. Saying “get well soon,” or “I’m so glad you’re looking better” isn’t helpful to a person with a chronic illness. I have very limited control over how I feel, and my disease does not go away. I might look my best when I feel my worst. It sounds crazy, but that’s how invisible illnesses work. Instead, say something like “is there anything I can do to help,” or “I understand if you need to cancel plans.” Not only do those words offer help to your friend, but they validate their illness and show that their health comes first. 

Number two: Don’t push it. If you know your friend has an invisible condition and they cancel plans or only stay for a bit, don’t pressure them into changing their mind. Most people with invisible illnesses often push themselves too far anyway, so if they say 30 minutes, don’t push for an hour. This will only make them feel like a bad friend and/or a failure. Make sure you agree on a plan that works for both of your needs. And if your friend cancels on you last minute, realize that they don’t intend to hurt you; nobody wants to hang out when they can’t get out of bed. 

Number three: This is something especially close to me, and applies to anyone even if they don’t have an invisible illness. (But it is especially hard for those who do). If your friend can’t go to an event because of their illness (or something else), don’t talk about how much fun you had, send pictures/videos to them, or make a huge deal over how great it was.

After those plans I brought up earlier, my phone was going crazy with notifications. My friends were posting pictures on all their social media accounts and saying how much fun they had. Of course, you can’t expect everyone to boycott the entire internet just because you couldn’t make it.

But why post something to your snapchat story if you know most of your friends weren’t there? Why send pictures in a group-chat if you know someone was sick and couldn’t go? You can still send that snap, but send it to the people who were with you. You can still exchange pictures, but take the extra time to only text them to the people who were able to be there.

I know I chose not to go to those plans. But it was my body’s choice; not mine. So when those pictures came flooding in, I still felt upset that I wasn’t able to be a part of the fun. You could argue that I could have ignored the notifications or turned my phone off altogether, but that’s not a practical solution.

If you want others to understand you and your illness, you’re going to have to let them know if their behaviors hurt you. And being insensitive to someone’s circumstances by sending them pictures of your outing (that they didn’t request; that’s a different story), even if you do so unintentionally, can hurt a lot.

So to everyone out there who can’t see me, all I ask is that you take my ideas to heart. Realize that even though we all look one way on the outside, we all have obstacles that aren’t seen. 

Yes, my illness is invisible. But that doesn’t mean my feelings are too. And even though you can’t see the real me, you can still try to understand that person. 

Disclaimer: In no way am I implying that people with visible illnesses and/or disabilities face challenges that are any easier than those with invisible conditions. I wrote this only to point out the challenges unique to people with invisible conditions. 

4 thoughts on “To the people that can’t see me: understanding invisible illness

  1. Hope January 24, 2018 / 9:50 pm

    Such good information… I learn so much from reading your posts. You are wise way beyond your years…

    Like

  2. Grandma jo January 24, 2018 / 10:29 pm

    I have tears in my eyes…. you write from your heart,
    and it’s amazing how well you articulate!
    You are so very special. love you to the moon and back!

    Like

  3. Grandma Janice January 25, 2018 / 5:01 am

    your article will help me become a more sensitive person. I hope your friends have the opportunity to read it. It is very enlightening. You have such a gift for writing.
    Grandma Janice

    Like

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