What Do I Tell People About My Disease?

What to tell people about your health, and how to tell them, is always tricky. This applies whether its a question about surgery or simply a question about how youre 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. Its especially awkward when its obvious youre not feeling well. 

One thing to remember is that you dont 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 Im 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 were tired or in pain, we dont always think straight. In these situations, we might inadvertently blurt out personal information we wouldnt otherwise have shared. The standard answer of fine doesnt always work because a few inquiring types want the whole story. They might boldly inquire, Really? You dont look fine. Whats the matter? 

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 doesnt reveal anything about your physical well-being, and it wont 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. 

If you feel strong enough and you do want to educate the person about your health or endometriosis in general and you feel theyll be receptive you may want to go into some detail. Pamphlets, brochures, and printed materials available from various endometriosis support groups are extremely helpful educational tools. Keep some in your purse or desk if and when you want to raise awareness.
If youd rather not reveal any details (either because you dont think the person would be supportive or you find it too personal to share), practice being vague and noncommittal without being rude. For example, if youve just had surgery and youd rather not talk about it, you could say something such as:

• Its a long story; I dont want to bore you!
• It was nothing life threatening; Im fine now.
• It wasnt contagious, so dont worry! (said with a laugh)
• Im feeling better now and dont 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, Its personal and Id 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 wed like. We may think its rude not to answer someones questions even when we dont want to. But its 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 dont need to know any more than were 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, its our choice.