To Those Who Don't Understand: Here is What My Invisible Illness Looks Like
Last updated: March 2022
“You look so normal, happy, and healthy”, are words I play over and over in my head. These are words I have been told many times.
More than I can count, honestly.
Even on days when I was in the middle of a horrible flare-up, a state of depression, and feeling like I didn’t want to live anymore. But to the outsider, I looked perfectly normal.
If I was to say, “well actually, I am suffering from depression, I am in so much pain and I really just wish I wasn’t alive”; they would look at me as if I had five million heads and I was telling the biggest lie ever.
But how do you prove to someone the pain you are feeling inside is real? You really can’t.
You can explain it until your face turns blue but if there is no evidence on the outside of anything wrong, you are swept under the rug as someone who just wants attention and is a hypochondriac.
This is what I and so many others with endometriosis have been dealing with for far too long.
My pain is real. Our pain is real.
Just because it may look different than what you think pain is supposed to look like, doesn’t mean it isn’t really there for us. So what does my invisible illness look like?
Pushing through each day
Yeah, you see me daily, getting up and getting things done. What you don’t see is the extreme fatigue and exhaustion inside of my body wanting to just give up and do nothing.
On some days, my body feels like it can shut down at any minute.
Faking my happiness
I laugh and I smile. A lot. But if I am being honest, a lot of times, it isn’t genuine.
That laughter and those smiles are my coping mechanisms when my pain is so unbearable but I have no other choice than to just push through. Behind those laughs and smiles are ovaries that feel like someone is dragging them across hot lava, rectum pain so bad it feels like I am sitting on a bed of nails, intense nausea that just lingers, and my inflamed insides just raging out doing whatever they want.
I want to help others who feel like me
I have always been one to help others. It’s something I love to do. No matter how hard of a day I am having, you can find me being there for others and helping them through their hard days by pushing them to move on.
When in reality, I’m most likely suffering myself and could really use help and support.
Appearing confident and happy
The picture you are seeing most likely took 20 tries. The other 19 I spent picking apart every ounce of me.
My acne from my PCOS. My big belly from endometriosis bloating.
My thinning hair or hair growing in places it shouldn’t. Behind that smile are a constant flare-up, a sense of sadness, and thoughts of wishing I were someone else.
Being social even when I don't want to be
This is one of the hardest parts of having an illness that people can’t see. Getting together with friends and going out to do fun things, mostly entails many tears beforehand, sometimes during, and even after.
The stress of wondering what kind of food will be available for me and my special diet, the thoughts of will there be bathrooms nearby I can easily access or will my pain stay at a low the entire time?
Or will I have to cling to my side, stomach, and butt because the pain decides to hit hard?
Sometimes I chose to do nothing
Somedays, even pretending I am okay, just can't happen. These days typically look like so much pain, discomfort, inflammation, and fatigue. I spend days laying down crying.
Usually, I beat myself up and I can't get anything done.
So you see, while I may look absolutely fine on the outside, I am falling apart on the inside. Endometriosis is real.
The pain many of us endure from it, is real. No matter how healthy someone may look or seem, endometriosis is real.
No matter what blood work or scans show 'nothing is wrong', endometriosis is real. It is time our family, friends, medical professionals start to see and understand this.
What does your endometriosis look like?
Do your endo symptoms ever cause you to feel socially awkward?
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