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What Happens After You're Told 'You Have Endometriosis'

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I guess they never explain what happens after you get the diagnosis you’ve been fighting for. Years of unexplained pain and symptoms, invisible on blood tests or imaging. “You have endometriosis.”

It’s not a death sentence, but you will deal with its’ wrath for the unseeable future. There’s no cure for it. Hormones, meds, diet changes and surgeries won’t make it go away. People who don’t see you every day won’t be able to see you have it or are affected from it, but the people closest to you have seen you struggle just to exist.

You cancel plans, even ones with the people you love the most. You miss out on a lot. You have to call out of work more than anyone you’ve ever known. You feel guilty. You push yourself to the brink of passing out from the pain before you even think of going to the ER. More times than not, it’s nothing “acute” and you get sent home with the same pain you came in with. Some visits you are treated as a drug seeker and patronized about how the ER isn’t for chronic illnesses. Little do they know, you’ve struggled at level 10 pain for days before your body just can’t take anymore, and that’s why you’re there.

You get mad at your body for betraying you and destroying you from the inside out. You feel tired…. ungodly tired.

But you know what else happens? You get stronger than you ever knew you could be. You start advocating for yourself instead of minimizing your needs as a human dealing with relentless, never-ending pain. You try to soak in every moment that you can with the ones you love. You cherish any part of the day that you’re at a manageable pain level. You appreciate being able to drive yourself places or go shopping. Even when the world is getting angrier and colder, you start noticing the little things in life that make your heart feel warm. You start being more understanding at why your body just needs more rest than others your age.

And even though the ups and the downs of this illness come in waves, every day, you wake up with the hopes it will get better. And you never give up. Your illness has made you a warrior.

Getty image by d3sign

Originally published: February 2, 2022
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