Endometriosis Facebook Groups: Learning the Difference Between Education and Support

I see you. I was you. I am you. I know what it is like. Feeling lost, angry, desperate for answers and some support. Maybe today you have had enough of the pain that doctors can’t seem diagnose. Maybe today you WERE diagnosed. Maybe you’ve heard the word before, or maybe not. But now, you’re at home on your heating pad, and if you’re like me you’re halfway through a bottle of wine. You have your phone or tablet out and have searched ENDOMETRIOSIS and read through WebMD, Wikipedia, etc.

There are millions of search results for Endometriosis. If you're reading about treatment options, you'll notice that information you’ve read so far is conflicting. Maybe you’ve seen some articles or came across a page by Dr. Redwine. (fitting, huh?) But again, you are overwhelmed, and your eyes start to blur from either too much reading or tears. (or both) Maybe by now you’re either convinced you have endometriosis, or now you aren’t so sure. Could it be cancer? Do I have Lupus? Is it appendicitis? You just don’t know anymore and the Google results that seem the most trustworthy such as the National Library of Medicine (anything with .gov in the url) are all written in medical terms that you don’t understand. You’ve probably spent, or like me,decided not to spend your time googling the definition of every other word from those medical journals.

You’re now three quarters of the way through that bottle of wine (maybe that's just me) and you open Facebook. You type “Endometriosis” in the search bar and BAM! An entire list of groups pops up. Support Groups. Real people.You get a little excited and start hitting buttons to join the group, but find that most of these groups require approval to join.

You might notice it, or you’re too overwhelmed to notice, that you’re asked to answer questions as part of your request to join a group. You’re not paying attention, though and before you know it, you’ve now requested to join at least twelve different support groups and guess what: none of them are approving your requests tonight. You go to bed, feeling defeated.

The next day you open your Facebook App and have several notifications. Your requests have been approved for multiple groups. Your news feed may even be flooded with posts from these new groups. You scroll through and read some of the post and you think, YES! This IS like me. You are so excited to talk to someone and you start typing. Before you know it, you’ve typed out three or four paragraphs of your story, your questions, your fears, etc.

Then you wait for a response. Some of these groups have tens of thousands of members, surely someone will reach out. But they don’t always. Depending on which group you posted it to, which you probably don’t remember now, maybe your post was just one of thousands and simply fell through the 'newsfeed cracks' not seen by many. Your own newsfeed is filled with Endometriosis post now. In fact, you could scroll for days trying to see if any of your Facebook friends still exist!

MAYBE (I'm guilty) in your haste you didn’t post to a support group page at all. One of the groups you’ve joined may be titled “Nancy’s Nook for Endometriosis Education” and it is likely that your post was deleted. You’ll either feel depressed, angry or both. How dare they, right?

You will likely go directly to that group page (to look for your post or maybe intending to ask ‘why?’) and you might see a post from the admin with statements that go something like this;

• We’ve had many new members who are not following the group rules.
• When you requested to join you agreed to spend time reading the materials posted here.
• This is an education group and not a support group.
• We cannot offer medical advice.
• Call your doctor.

Breathe. Here’s what you need to know:

Sometimes even when we KNOW we broke the rules, in our already vulnerable state, we may feel like we’re being reprimanded, singled out even. I know because I broke those rules. Unintentionally, of course. I didn’t even realize which group page I was posting to. Yes, I was a little tipsy. (I assure you I'm using this to lighten the mood and I don't have a drinking problem)

Here’s the thing. You are not being singled out; I promise you. You are not being bullied by admins when they give short responses such as: ‘use the search bar for xyz...”

You see, hundreds of other women just did what we did. They broke the rules and per the terms you agreed to when you requested to join, you could be kicked out of the group; Be glad you were not!

The thing is, you are in the best place for answers. You don’t need to be one of thousands on a support page right now; you need to be educating yourself on this disease and what you can do to get better. Everything you need is at your fingertips. Provided free to us by the hard work and dedication of women who want to help us all. Who have jobs and families of their own. All we must do is read. Trust me, you’ll find everything you need to know here.

The first thing you need to know is the files posted to the Nancy’s Nook for Endometriosis Education group page is best accessed by PC or Laptop than your Facebook phone app. Navigate to the group page and look to the left side bar. You should see selections such “UNITS” and “FILES”

Start with Unit One and go from there. Pace yourself. I understand that you want to know it all right now, but trust me on this.

Read a little everyday so that you don’t overwhelm yourself. Keep a journal and write down your questions. Chances are, you’ll find answers as you move on to the next Unit.

Once you get through the basics, you’ll find that there is a list of vetted doctors who perform expert excision for endometriosis. There are even resources for working with your medical insurance companies and appeals processes. It’s a lot of information, but it is the very best information.

When you get to the doctor list, don’t get discouraged if there isn’t a doctor listed in your city, state or even your country. There is always a way. It may take you longer, but you are on a journey and what you have now that you didn’t have before is KNOWLEDGE and HOPE.

Go ahead and join a support group because making a few friends out there and finding that support and encouragement to keep going is important, too.

Sometimes we just need someone to wine to, sorry WHINE to..... Puns aside, I hope that if you’ve stopped here to read this, when you get to Facebook group searches you’ll be sure to differentiate between support group and education group.

With over 82,000 members and growing on Nancy's Nook, breaking those rules by posting, only floods the page and we make it more difficult for the informative, educational, and very important post to be seen.

Hang in there, girl. You've got this! I know the pain. I know the frustration with the medical community. You aren’t alone in this at all. Your journey to healing has just begun.