8 Things You Should Know About Endometriosis Sufferers

Posted on July 14, 2016

There’s a lot of misinformation and misconceptions about endometriosis. Did you know that one in 10 women live with this painful condition?

By our friend and blogger Mara Rose

We are breaking our silence and standing up against a frustrating, misunderstood disease.

As a loved one or sufferer of the disease, there are things you need to know.

  1. One day is not like the other. We might feel great one day and entirely rundown the next day. Unfortunately, it’s completely out of our control.
  2. We don’t like disappointing you. Most of us feel terrible if we have to cancel plans due to this chronic illness. Please don’t take it personally. We still like you.
  3. Don’t tell us to get a hysterectomy. How would you feel if we told you to go yank out your baby maker without any regard for what that might mean for your future? That is a HUGE decision and does NOT cure the disease. Frankly, it’s a bit offensive.
  4. We aren’t faking it or seeking attention. You may have seen us wince in pain or double over at any given moment. I don’t expect everyone to understand, but this is a real disease with real pain. Fact.
  5. Listening and educating yourselves means the world to us. I had a friend that spent a whole night reading about Endo and then asked me questions the next day. Honestly, it was so touching that she wanted to understand.
  6. We are not lazy. I might spend more time resting than the average person, but that doesn’t mean I am lazy. Our illness is chronic, which means we fight all day, every day without a break. It is in our best interest to rest as much as possible.
  7. We have special diets that help us feel better. Although it’s not always convenient, eating gluten free or dairy free or soy free really does help to lessen our symptoms.
  8. Ask us how we are doing. I love it when my besties check in on me or when my sister calls to see how I am feeling. It helps us feel like we aren’t fighting this alone.

This post originally appeared on WordsByMara.com and is reposted here with permission.

Mara Rose is a writer living with endometriosis, adenomyosis, fibromyalgia and degenerative disc “disease.” She lives in Wisconsin with her husband and son, Micah. She’s quite active in the endometriosis and chronic pain online communities, and she’s currently working to develop local patient mentor programs in her area.

A MyEndometriosisTeam Member said:

I’d love to hear about your advocacy work and how you got started??

posted 10 months ago

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