Endometriosis is a complicated disease that affects half of women worldwide. Although it is most commonly found in and around the uterus, it can affect the whole body through side effects and spreading. This is a series of snapshots I’ve written over the past couple of weeks to document what it can feel like living with Endometriosis. Everyone is affected by it differently, but the most common side effect is pain. There currently isn’t a cure, but my hope is that by talking about Endometriosis we can raise awareness, and even help find a cure someday.

I. I am tired of feeling tired all of the time. 

Not just tired—utterly exhausted. Drained. I am running on empty and can’t even muster up the energy to shower. But I smell because I’ve been sweating from the hot flashes caused by my cramps, so I wipe under my arms and my boobs with a washcloth, use dry shampoo in my hair and muster up a smile before leaving for work. Or to go to a party. Or to run some errands. Or to just feel human.

II. It’s 80 degrees out and I’m in my air-conditioned bedroom curled around a heating pad. 

The fan is pointed at me but I can’t get relief. The heat and the pain are tearing me apart. I snuggle a stuffed animal and try to sleep off my discomfort, but it’s too much, so I stare at the back of my eyelids and try to zone out.

III. I poke at the worm-like scar under my belly button.

It’s thick and ugly. The dark pink shape screams from my pale stomach and the rough skin makes me queasy. It also interests me, because now where there is this line of scar tissues there was an incision. And now it’s closed up. The smaller scar, a light pink arrow right where my pubic hair starts, is more subtle. The shape almost makes me laugh—an arrow right above that area. Hilarious.  But it’s also anything but funny.

These marks are from the first of what may be many surgeries. All because of my condition. An unavoidable condition that I’m stuck with the rest of my life because there is no cure. These random shapes are a familiar part of me now. Just as my piercing holes and stretch marks and scars from being a clumsy kid. They help tell the topographical story of my body and all that it’s been through. 

IV. I can’t sleep.

My whole body hurts again. I have cramps, probably caused by the food I ate for dinner. My legs ache and I keep moving them around under the covers to get comfortable. My joints scream. The pain in my lower back is hot and radiates up back to my arms and down my thighs.

My eyes struggle to stay open; my eyelids are heavy but my brain won’t turn off. My head feels like it’s underwater. My heart is permanently broken but some light shines through the shards. Maybe tomorrow I’ll feel better? I doubt it, but hope is the only way I can keep on living like this.

V. I am a 26-year-old woman but I feel like I’m in my 80’s.

I’m confused. I’m exhausted. My joints and limbs ache. If I overdo it, my body will scream at me. If I move too much, I feel pain. If I move too little, I feel pain. I am very tired in more ways than one. I try to think of pain-free days when I get stuck in an endo flare and I keep on trucking along because it’s the only thing I can do.