The Hidden Cost of Endometriosis

This is likely to be a pretty triggering post, so if you are suffering with your mental health right now, please stop reading here.


I don’t know about you, endo-friendos, but I live with this weird, constant melange of guilt, despair, fear, anger, grief, self-loathing and apathy underlying everything.

You feel guilt because you know you are a burden on the people around you.  You can’t do much around the house, so the people you live with have to pick up the slack.  You can’t go out with your friends, so they always have to come to you.  You can’t always be physically intimate with your partner, even when you both want to.  You miss a lot of work, so your colleagues have to scramble to cover you.  Sometimes, you can’t do anything at all and literally just need a carer, so someone has to do that.

You feel despair because the pain seems unending and you feel like it will go on forever.  You feel despair because all your options seem bad.  For instance, if I want to conceive a child, I have to stop taking the three kinds of birth control on which I rely to have a semi-normal life, at which point I’ll probably be in too much pain to do much in the way of conceiving anyway.  You feel despair because you see your life fall apart around you as you slowly give up the things you love because you just can’t do them any more.  You feel despair because doctors don’t believe you or don’t care, or won’t or can’t help, or think you are exaggerating or trying to get drugs.  You feel despair because you know that there is a limit to how much you can take and you might just be getting close to that.

You feel fear because your own body, the one thing you should be able to trust, is in constant rebellion against you.  You are scared because you never know when work will decide, this is it, she’s just too unreliable, and kick you to the curb.  You feel fear because you are so often trying new medications, new surgeries, and you don’t know if this one is going to work or make you worse.  You feel fear that you will become too much of a burden and your friends and family might just decide they can’t handle it any more.  You feel fear because endometriosis is very expensive, and you aren’t sure if your pay is going to cover everything this week.

You feel anger because this thing, this disease, is so pervasive, but no one can tell you why you have it, or how to cure it.  You are angry because it gets dismissed as “period pain”, or you get told to have a baby because somehow that will magically solve everything.  Anger can be good, because it burns hot, but too often it just fizzles down into despair.

You feel grief because you are in mourning for the person you used to be, healthy and happy and carefree, and for the life you could have had and now never will.

You feel self-loathing, because you can’t will yourself better.  Maybe you hate yourself because you’ve gained weight from the enforced inactivity and the medication, and you don’t think you are allowed to be fat and beautiful at the same time.  Perhaps you hate yourself because your medication makes your hair lank and brittle, riddles your skin with blemishes, makes you sprout unexpected dark hair, makes you bloat and turn red and you can’t recognise yourself in the mirror anymore, but you can’t escape that image either, and it torments you with words like “ugly”, “unworthy”, “lazy” and “unloveable”.

And maybe you feel overwhelmed with apathy.  Perhaps it is because there is too much emotion and you can’t deal with it all so you just shut down.  Perhaps it is because whatever pill the doctors have you on this week robs you of any ability to care about anything.  Whatever it is, it’s really hard to fight it off when it rolls over you like a smothering grey fog.  It numbs you.  It’s easier than despair, and even harder to climb out of.

Despite all of this, there’s one emotion I don’t have to suffer, and that’s because I have the privilege of being a cis-gender woman.  For my sisters, imagine for a moment that your whole identity is being a man, but you are stuck with a uterus, and you hate that uterus, but it keeps demanding your attention, and screams at you, “hey, still here!”  I cannot imagine how triggering endo must be for a transman with body dysmorphia (I acknowledge that there are trans folk without body dysmorphia).  I can’t speak to this point further because I am not a transman, but if any of my readers are and don’t have a platform to speak about that, please drop me a line.  I’d love for you to write a post sharing your experiences.

Feeling all of these things is hard.  It’s draining, and some days staying positive is impossible.  You find yourself deliberately squashing hope, because it has been taken away from you before, and that hurts.  You find yourself hating people who say well-meaning but completely uninformed things, and distancing yourself from people who love you.  You focus on all the worst parts of your life and this disease, and become utterly bleak and fatalistic.

Please know that it is ok to feel bad.  You don’t have to fake-smile your way through this disease – it sucks, and it hurts, and it is ok to feel upset about it.  I’ll go more into this in future, but please keep the Lifeline number handy if you feel things are getting too much for you.  Sometimes just venting these feelings to someone can be such a big help.  Lifeline: 13 11 14.

This post has mostly been a brain-dump about all the ways that endo makes me feel bad.  In my next post I’m going to be a little more constructive and talk about some mental-health tips for dealing with these feelings.  Please feel free to comment below about how endomtriosis has effected you emotionally, and how you keep your head above water.


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