What do I tell others about endometriosis?

by Ellen Johnson | This article was inspired by a 1998 post to WITSENDO

What you tell people about your health, and how to tell them, is always tricky.

This applies whether it is a question about surgery or simply a question about how you’re feeling.

When you have a chronic illness, you might find it difficult to answer a typical:

“How are you?” inquiry, with the standard: “Fine, thanks” reply.

It’s especially awkward when it’s obvious you’re not feeling well.

What exactly do I say?

One thing to remember is that you don’t have to tell people anything!

You can always be vague and noncommittal if you choose. In some situations, that might be preferable, especially if you know the person is just being polite.

So, before you answer, ask yourself a few questions:

Who is doing the asking? Do they really want to know how I am? Or are they just making conversation?
Do I really want this person to know? How will it affect our relationship if I reveal how I’m really feeling?
How do I really feel emotionally and physically right now? Am I strong enough to talk about this subject, or do I just want to move on?
Do I really want or need to educate this person about my health or my disease?

Sometimes the question catches us off guard. When we’re tired or in pain, we don’t always think straight. In these situations, we might inadvertently blurt out personal information we wouldn’t otherwise have shared. The standard answer of “fine” doesn’t always work because a few inquiring types might want the whole story. They might boldly inquire, “Really? You don’t look fine. What’s the matter?”

How do I say it?

Being prepared with a few standard replies can prevent a lot of frustration. For example, one favourite reply to, “How are you?” is “Could be worse!”

Sometimes it makes people smile or laugh. It doesn’t reveal anything about your physical well-being, and it won’t bog you down in a ten-minute conversation that could diminish your time and energy. One of my personal favourites is, “Hanging in there.” This kind of reply usually satisfies all but the most curious questioner.

How do I educate people about my health?

If you feel strong enough and you do want to educate the person about your health or endometriosis in general – and you feel they’ll be receptive – you may want to go into some detail.

Pamphlets, brochures, and printed materials available from endometriosis support groups are extremely helpful educational tools. Keep some in your purse or desk if and when you want to raise awareness. (See also the article when others don’t understand for more educational resources.)

If you’d rather not reveal any details (either because you don’t think the person would be supportive or you find it too personal to share), practice being vague and non-committal without being rude. For example, if you’ve just had surgery and you’d rather not talk about it, you could say something such as:

“It’s a long story; I don’t want to bore you!”
“It was nothing life threatening; I’m fine now”
“It wasn’t contagious, so don’t worry!” (said with a laugh)
“I’m feeling better now and don’t want to re-live that lovely hospital experience!”
If the questioner persists, you may need to respond with something a bit more assertive, such as, “It’s personal and I’d rather not go into the details.” Then change the subject and ask something about the other person. Any topic will do. People are usually happy to talk about themselves.

Sometimes we reveal more about ourselves than we’d like.

We may think it’s rude not to answer someone’s questions even when we don’t want to. But it’s not rude to protect ourselves.

We have the right to decide when and if we reveal information about our health to others. Likewise, others do not have a right to know the intimate details of our lives. They don’t need to know any more than we’re willing to reveal.

When it comes to what we tell others about endometriosis, we are in control. We might choose to become an “endometriosis evangelist” or we might decide to keep our health problems a secret. Or we might settle on telling a few close friends.

Whatever path we take, it’s our choice!