To the People Who Tell Me I’ll Feel Better If I Go Out and ‘Get Fresh Air’

Dear World,

I know most people assume how healthy you are by the way you look. If you’re smiling, have makeup on or are dressed well, they think you’re healthy and fine.

But that’s not the truth.

Often we hide how we really feel, especially those of us with chronic illnesses. When someone asks how we are, our standard reply usually is, “I’m fine.” It’s not like we don’t want to share, but we know most of the time, people won’t understand. They don’t get how we can be so sick all the time.

The other comments we get are, “If you go out, you’ll feel better” or “Just get out of bed.” This year is the sickest I’ve been during my past five years of coping with severe debilitating illnesses. Currently, I get extreme fatigue to the point that even sitting up in bed for five minutes exhausts me badly, leaves me breathless and increases my pain.

Every single thing I do causes my symptoms to get bad and leave me gasping for breath. I have an increased heartbeat, increased pain, exhaustion, extreme dizziness and nausea. Feeling like fainting is normal for me. I feel like that all the time. And these are just basic symptoms. There are a ton of other symptoms and diseases that I don’t talk about publicly.

And then people actually tell me to go out and get fresh air, and I’ll be fine. Like seriously?

I’ve always been extremely determined, and to this day, I try my best to be functional. I stay positive 90 percent of the time, even though I suffer from depression. And if that isn’t an achievement, I don’t know what is.

The point here is that even if you don’t have bad intentions, please don’t judge others — ever. You don’t know what’s going on behind that smile. When you say things like “Get fresh air, and you’ll be fine” or “Stop thinking about your illness,” I feel devastated. I feel broken, hurt and dejected. All my efforts of trying to stay positive go down the drain. It makes me feel like I’m the culprit, and then I try to do more and what’s the result? I’m stuck in bed for weeks.

When I say I can’t do a particular thing, I’m not being negative. I’m just being practical. I know my disease, my symptoms and my limits better than anyone else. And, believe me, it hurts me the most when I’m not able to do anything or when I have to be dependent on others. But you have to understand that it’s not in my hands because if it were, I wouldn’t be here, lying on the bed. I would have achieved my dreams.

And then there’s the “Don’t think about my illness” comment. The point here isn’t about not thinking. That can never be because my disease is there 24/7. It lives and breathes inside me. Do you think it’s something I could forget?

Now getting on to the “not looking ill” part.

First and foremost, all of my diseases are invisible, meaning they can’t be seen on the outside. You can never guess the intensity of my sickness from my looks.

Secondly, and luckily, I have a thing called “makeup,” which helps me hide the huge dark circles. Eyeliner makes my droopy eyes look bigger, lip balm makes my chapped lips soft, lipstick brightens up my face and reminds me to smile, which is by far the best concealer I know. I can transform myself from a panda to a healthy-looking girl in a few minutes.

Thirdly, even if I don’t use makeup and still look healthy, that doesn’t mean I’m OK. You only see me through my social media profile. You only see what I choose to show you. You do not, I repeat, do not know my daily battles. You don’t know how much I struggle to get out of bed every morning, how I keep falling on the way to the bathroom, how dizzy and painful brushing my teeth makes me or how I literally drag myself to take a bath every day.

You don’t see me struggling to eat even when I’m hungry. You don’t see me struggling to understand simple things due to heavy brain fog. You don’t see me struggling to speak and talk to my own family. You will see this post, but you will never know the amount of pain it caused me to write it.

And when you don’t know anything about my life, who are you to judge?

Sincerely,

Your Average Chronically Ill Girl