A woman very frustrated by the unsolicited advice she is getting, she has tried everything

The Risky Business of Opening Up About Endometriosis

Last updated: September 2022

Endometriosis is tragically under-researched. Awareness is so scarce that people either can't pronounce it correctly or think it just means terrible periods.

Educating others is a role that falls on advocates who, in their majority, live with this disease. This involves becoming incredibly vulnerable about something private.

Sharing more about my chronic illness

As we raise awareness, we often permanently alter how others see us. We also engage in uncomfortable conversations that do us little good. Because of other people's reactions, I usually dread mentioning endometriosis.

Fear of being rejected

As someone navigating the dating pool, I know a chronic illness is not a trait many seek in a potential partner. During a first date, I doubt anyone wants to hear about my gastrointestinal issues or how I periodically lose bucket loads of blood.

Should I mention it after discussing whether we are a dog or a cat person? Is it a third-date conversation?

When dating, being rejected because of my disease is a real, frightening possibility.

Sometimes speaking up means losing

I have gone down the route of being vocal and leaning on others for support. However, that honesty came at a price. For someone I loved dearly, it all became "too much," and they dropped me from their life.

Also, when I tell others I am unwell, "thinking of you" is something I hear overwhelmingly often. Yet, I don't know what to do with someone else's thoughts other than feeling very alone.

When I go off-radar due to my symptoms, instead of empathy, I get questions that feel like accusations: "Why did you withdraw?" Yet when flare-ups strike, all I can do is take a step back and rest as much as possible.

Explaining this does not stop others from excluding me from group chats and outings. If I push the matter further, I get accused of going "into hiding” and told to explain my behavior to be "re-accepted."

It breaks me to apologize for a wretched, life-disrupting illness I never chose.

I do not like getting random advice

Any talk of endometriosis symptoms will regularly result in unwanted advice. Last week someone told me to steam my vagina. It may have come from a good place, but it reminded me how this person knew nothing of my experience.

My pain is so crippling that no amount of steam will help. How can I steam anything when I am in extreme discomfort, horizontal, and passed out?

This does not mean I don’t speak about my illness

I have been writing about endometriosis for years. With the amount of material I have on this disease, I could probably do a stand-up routine about it; I'm just not sure how funny it would be.

Questions about the nature of my illness don't bother me. I welcome them. However, I choose to open up about my personal experience only when it feels safe.

I cannot control how others view me or their reactions to my illness

Yet, I can choose who sees my most authentic self. A friend recently labeled me a “warrior', after I made a swift remark about how I was doing. All she saw was my strength, ignoring the flaws I could not control.

More importantly, she didn't ask me to explain myself for past absences.

While I don’t see my friend often due to our busy schedules, when we can meet, she reminds me that I am so much more than this disease. Endometriosis is the last thing my friend wants me to open up about, and I cannot help but love that.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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