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10 Things Not to Say to Someone With Endometriosis

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But you don’t look sick.

*insert eyeroll here*  Of course I don’t look sick, that’s why it’s called an invisible illness. I’m also clearly a fantastic actress – because I manage to hide how much endo affects my life almost every single day. As your parents probably told you when you were younger, don’t judge a book by its cover..

Oh yeah, I get period cramps too.

Most of the time followed by “I don’t get to take a day off work for them though, lucky!” This is not some kind of competition for who has the most pain. But, endometriosis is not the same as just having “cramps,” it is pain throughout every part of your menstrual cycle, even if you no longer have periods. And believe me, out of the options of going in for a day at work, and spending a day curled up in the fetal position in bed reliant on medication and hot water bottles for relief, I know what I would choose.

Have you tried hot water bottle/ibuprofen/yoga/keto?

As a matter of fact, yes I have. If it was as simple as one of the above suggestions, do you think that I would still be in pain? I know you’re trying to help, but if my pain could be cured by ibuprofen then I wouldn’t be pumping my body full of strong pain medications and putting it through surgery.

So are you going to start trying for children?

This is a hugely personal question, and can split open many a painful wound for a woman with endometriosis. Unless this is a topic that you openly talk about with to this person, or they initiate the conversation, don’t bring it up. Just don’t.

Didn’t your surgery cure you?

There isn’t a cure for endometriosis. I’m a bit more patient when it comes to people asking this question, because logically it makes sense that surgery to remove the adhesions should cure you. But it doesn’t. There are only so many times you can answer this question though…

At least it’s not cancer.

Yes, you’re right, that is something to be grateful for. But why bring it up in the first place?! How is that helpful or constructive?! By this logic, you could dismiss almost any medical condition, but how does that help the people who are diagnosed with non-cancerous conditions?

Oh yeah, my friend has that and she’s fine, just had her third baby.

That’s really great for your friend. But it’s not a great thing for me to hear. Everyone’s situation is different, and it’s such a sensitive topic, you don’t know how people will respond. So, it’s really great for whoever you know with endometriosis who has just had a baby, but it’s not always great for a childless woman with endo to hear this.

You’re only young, you don’t need to rush to have kids though.

Maybe you’re right. But where is your medical degree telling you this? And most research shows that the younger you are the higher your odds of conceiving. And as I keep pointing out, talking about starting a family is not a topic that should be casually and carelessly flung around.

Surely you only struggle once a month though.

Oh if only. Endometriosis is the gift that keeps on giving. We are able to experience pain every single day. You can also experience very irregular periods and bleeding between your periods. Both of which can cause more pain. Then there is ovulation pain, the fatigue, the brain fog and the constant aches and pains you feel over your body.

Isn’t period pain normal?

Discomfort during your period is expected, but pain that renders you immobile is not normal. This is probably the most dangerous of statements, because young girls grow up expecting to experience pain during their periods, and in turn don’t seek medical advice as soon as they should do if they have issues with periods. Struggling to get off the floor, go in to work, sleep, eat, exercise or perform basic household chores is not normal.

What would you add? Let us know in the comments below.

This story originally appeared on My Endometriosis Diary.

Lead photo courtesy of Unsplash

Originally published: July 12, 2019
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