The Side of Endometriosis That Cannot Be Seen

It’s hard not to think about it. Hard not to envision it. At the bus stop. On the bus. Waiting for a train. In the supermarket. At work. At a party. At night. In bed. Picture it sticking to you. Wrapping around your organs. Around your ovaries. Adhered like glue, pulling at your bladder. All moss-like and red. Thick red lesions. Dark burns like charcoal. Angry and inflamed tissue. Web-like masses. Sticky. Sore. Everything stuck together. One big web. One big mess. Right beneath your skin. Your hand hovering over your swollen belly. It’s hard not to imagine it, right beneath your hand. There right now. Right below the surface.

I am at the doctor’s. I am having a pelvic exam. I turn to face the wall. The nurse holds my hand. There is cold jelly. There is a speculum inserted. I don’t know why but I am crying. Silently. It hurts. Then it is over. The doctor tells me he suspects endometriosis. I turn that word over in my mind. I say it. Endometriosis. I call my mother and say it to her. I go home and I look it up. I read about it online. Endometriosis. A disease. Endometriosis.

I come back months later. I put on a gown and long tight stockings. A needle is placed into a vein in the back of my hand. I am asleep. And then I am awake. Groggy and blurry-eyed. The surgeon comes to see me. He tells me he saw it. Endometriosis. I have a disease. I have endometriosis. I am officially diagnosed with endometriosis. I sigh with relief. I am happy. No, I am not happy. I am believed. My body and my pain are validated. After all these years. After nine years. Of mystery symptoms. Of pain. Now stamped. Confirmed. Approved. I am discharged. I go home.

But soon that feeling stops. It goes away and it doesn’t come back. I have an illness. I have a disease. Inside my body something is not right. It is not my fault. It is not invented. It is not made up. It is real. There are photos. Medical photos. There were surgeons. They confirmed my suspicions. I am sick. I have a disease. But that feeling, of relief. That validation is gone. It goes away, it is no longer mine.

Arriving to fill its place are long blank stares over tables. Sad eyes. Eye-rolling. Subject changing. Questions. A lot of questions. How are you? How are you now? How are you doing? You look good. Are you better? You’re not better? Why aren’t you better? Are you feeling better? When will you be better? You look well. You don’t look sick. Tell me again, why can’t you eat that? What is the plan? Do you have a plan? What will you do? Have you tried yoga? Have you tried meditation? Have you tried green tea? Have you tried not eating dairy? Have you tried wellness? Have you tried nutrition? Medication is bad for the body. All those chemicals. Can you have babies? Are you infertile? You should have a baby. You should start having babies. Have you tried swimming? Have you tried jogging? Are you feeling better? We all just can’t wait for you to feel better. To get back to normal. We just want you back to normal.

But normal changes. Normal once was early mornings and being busy. It was completed to-do lists. Events. People and things. Normal was the absence of feeling. Of nothing hurting. Nothing bleeding. Normal was moving your body through the day and not stopping once to think about it. Not stopping to wonder how you do it.

Normal is now aching. A deep aching pain. Always. Sunken eyes. Grey skin. Swelling. Bleeding. Blood that is red, then brown, black. Thick. Heavy. Everywhere. And then clots, thick, fleshy and grey. Hidden behind clothes. Not seen. Not talked about. Embarrassing.

Normal is now tiredness. Exhaustion. It is being slow. It is feeling slow. It is being withdrawn. It is feeling sick. It is being sick. In the toilet. In the bath. In the sink at a party. At a relative’s house. Always vomiting. Keeping it secret. Feeling sunken. Feeling smaller. Thinking about it. Thinking about pain. Always thinking about your body. Assessing every twinge, every tug, every pull, every ache. Waiting. Holding your breath and counting. Waiting for it to stop. To get worse. To come back again.

It is exhausting. It is chronic. It is now your normal. But these things, although real, do not indicate illness to others. They are not seen. They are private. There will be eyebrows raised. Questions. A lot of questions. Pity. People being sorry. People being sad. People not believing you. Not believing in that deep ache, capable of consuming you. Starting out as a twinge, then a tug, then a throb. Deep. In the center of you. Ebbing out. Growing. Filling up your body. Expanding at the edges. Taking hold of you. They do not believe in that. They do not believe it can really be that bad. It is invisible. It can be felt but it cannot be seen. Not at the dinner table or in the office or at a family gathering or at a birthday party.

But your pain is real. Your illness is real. It can be seen during hospital scans. In a dark room on a leather chair covered in blue paper. With feet hooked into stirrups. With a condom placed over an ultrasound probe. Now inside of you. Pushing. Hurting. On a screen. It is there. Maybe for five minutes, sometimes ten. Sometimes fifteen. It is a black vibrating shape, fuzzy and out of focus. A thick egg. Misshapen. Bad. Diseased. It can be measured. It can be recorded, put in a file somewhere. Out of the way. Put down on paper and examined again at an appointment weeks later. But on the train home it is gone. No one can see it. It’s just an image in your mind. A memory. A blurry memory. Only your memory.

This disease can be seen in the operating room. When you are unconscious with a tube in your throat and a needle in the back of your hand. Incisions made in your abdomen. One on the left. One on the right. One inside your belly button. Sometimes more. Air is inserted. Your abdomen expands. Large, distended, bloated and alien-like. Doctors in scrubs, with hair and mouths covered, looking at a screen. They can see it now. Moss-like. Thick. Blue burns like charcoal. Red swollen lesions. A bowel stuck to the abdominal wall. Disease sprinkled throughout the pelvis. Sometimes scattered, sometimes flooded. Enveloping everything. Disease everywhere.

But this cannot be seen on the bus. Not at breakfast tables. Not in lecture halls or at wedding receptions. Not in break rooms. Not in bed alone at night. So you will explain this. You will spend a lot of time explaining. Defining. Justifying. You will want to be heard. You will want to be believed. You will pursue that feeling you had in the hospital bed the first time. That first time you heard it. Disease. Illness. Those things are not you. But they are part of you. You will come to accept that. You will answer people’s questions. You will cover up your symptoms to be polite. You learn to pull in that pain. Learn how to pull it closer to you. How to hold it tighter. How to make it quiet. Pulled against your chest. Pushed down, just below the surface. Pushed and squeezed into some deeper part of you. Some secret part. An invisible part. Muffled. You will carry it with you. You will learn to live with it. To go on. You will answer their questions. You will explain. You will be tired.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by egirldesign