How to Respond to Someone Who Doesn't Understand Endometriosis

Editor's Note: May 13th-18th is Women's Health Week! Join us as we highlight women’s health issues (including endo!), and share messages from strong women across the world.

As an endometriosis patient, I’ve had a wide variety of exchanges discussing my illness. I’ve encountered those who are completely clueless when I’ve mentioned endometriosis, and even a few who seemed weirded out by it. I’ve also have had my fair share of strange responses from people who fail to take in what I am saying, or simply struggle to understand what this illness is really about. Then there’s those who think they know better than me, and think they must "fix me".

It can be extremely upsetting to constantly explain or defend one’s decisions regarding an illness like endometriosis. Most of the time, I manage a good response, but others, I am frozen by a mixture of nerves and awkwardness. I can't be the only one wishing someone would have given me a set of cue cards to deal with everyone’s questions. So, below are a few examples and some tips on how to react and what to say, for the sake of our own wellbeing.

“Are you sure you should be doing that?”

They may question our ability to do anything from aerobics, to running in heels, or going vegan. To some people, their chronically ill friend is someone who is either not trying hard enough, or doing it all wrong. The best approach I found is to smile, and just reply, “Of course I can, I do it all the time”.

“But, you look healthy to me?”

We should explain that endometriosis symptoms are, mostly, not visible. The reason we are able to stand and talk to them its either because it’s a good day, or we have a series of tools in place (painkillers, special diet) that allow us to function.

“My friend/sister/neighbor also has bad periods!”

Endometriosis is so much more than a bad period. We could describe some or all of the symptoms that come with it, from chronic pelvic pain, bleeding that goes on for weeks, the chronic fatigue, or the shooting leg pains.

“Can you have children?”

Any talk about my fertility and child bearing intentions is something I am still learning to manage. I’ve done the short and sweet yes/no answer, but recently I elaborated and explained everything from fertility ratios, to the general state of my womb. The best way to approach this subject is to explain how this is a private, complicated subject and that we'd rather not discuss it.

“Did you know that pregnancy cures endometriosis?”

Especially troubling when it’s a doctor who says this... Pregnancy does not cure endometriosis, it merely puts its symptoms on hold. After women finish breastfeeding, it is very likely the illness will come back.

We can't control how people will respond

These are all possible answers, but it's important to remember that we cannot control how people will take them. Their own feelings are for them to manage. In this case we are trying to control a situation that puts us at our most vulnerable. These conversations will negatively impact only us. We are the ones repeatedly exposed to the feelings they generate.

*Does this advocate's experience resonate with you at all? We would love to hear your experiences, thoughts, and stories in the comment section below!*