How to Be a Good FriEndo: Making the Most of Online Support Groups

Online support is a vital part of endo communities, here’s how to make them work for everyone.

By B. Neufeld

Joining a Facebook support group like The Endometriosis Network Canada can be intimidating and often results in a serious case of information overload — especially if you are new to or seeking a diagnosis. It’s difficult to know where to start, and it’s easy to get lost in the scroll. 

Whether you know what answers you’re looking for or just want to experience the company of other people who just get it, there are many ways to use online support.

Here are a few tips on how to get the most out of online support and be a great friEndo.

Soak it all in and see how it works

So, you’re a new member. First off — Welcome!

You’re now in the company of thousands of other people who have a pretty good idea what you’re going through. Once you’ve read the group rules, take a day or two to look through previous posts to see how things work.

Most Facebook groups have a ‘Files’ section that contain excellent resources and The Endometriosis Network Canada is no different. Our files contain information on surgery prep, inclusive language tips and a list of excision surgeons in Canada, just to name a few. Between the files and previous posts, you may learn a lot without even having to make a post.

Mod Tip: To follow a post you’re interested in, use the turn on notifications feature. You can do this by clicking on the three dots on the top right corner of a post, where you’ll then see a few options, including “Turn on notifications for this post.” This will make sure you’re notified when someone comments on that post but it doesn’t clog up the comments section. It can be frustrating when you ask a question and none of the replies answer your question.

The ‘Search’ feature is your friend

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The Endometriosis Network Canada is moderated by an amazing group of volunteers who are dealing with many of the same health issues that members are. Everyone does their best to respond to inquiries as quickly as possible, but sometimes it may be hours before a post is seen by a moderator. Before you post a new question, do a search for a keyword in your question – there’s a good chance it’s been discussed before and you can explore previous answers.

Mod Tip: If you’re looking for information about Visanne or Lupron, two common endo medications, doing a search for either word will bring up numerous past posts. Your question will likely be answered but if you still can’t find what you’re looking for, feel free to post a question and someone will answer it as soon as they can.

Meet people where they are

We were all beginners at one point. Remember when you were just setting out on this journey? While you may be under the care of an excellent excision specialist who’s well versed in endo, some people might be going off of outdated information their GP or gynaecologist is telling them. Be patient and kind with people who are still learning.

If you’re a beginner, know that people are commenting because they want you to get the best care possible. It can be an uncomfortable feeling when you start to realize your doctor doesn’t always have the answers. It’s tough to hear that the gynaecologist you love and have seen for the past 10 years doesn’t have the training to deal with endo. Many people have shared experiences and it’s a safe space to express yourself.

Remember we all have unique challenges in our own endo journeys 

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The Endometriosis Network Canada is made up of a diverse group of people, all with unique life experiences.

Some of us are able to access excision surgery without having to travel too far and some of us have to travel across the country. Many Black, Indigenous and POC members of the endo community experience systemic racism that prevents them from receiving proper care. Some transgender and non-binary people may struggle to find an excision specialist who also respects their gender.

It’s also important to remember that some people are unable to travel for surgery. This doesn’t mean they don’t take treating their endo seriously; it means they have obstacles you may not have when accessing excision.

Mod Tip: Try to remember that while everyone shares the burden of endo, we all have different experience and obstacles that contribute to our journeys. Never assume your experience is the norm and try to be as inclusive as possible when addressing your concerns. 

Be kind

How you share information is just as important as what you’re sharing. Tone is often difficult to read online and misunderstandings can easily happen. Be as clear and kind as possible when commenting on posts. Before you comment, take a moment and read what you’ve written outloud to yourself. Is there a chance your words might hurt someone or be taken the wrong way? If you’re not sure, take a step back and revisit the comment. You may find you no longer feel the need to post or that someone else has responded with what you weren’t sure how to say.

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Groups like The Endometriosis Network Canada work the best when people learn from other people’s experiences that they share about in posts and comments.

This can’t happen if conversations happen in private. Encouraging people to privately message you leaves out thousands of other people who could possibly benefit from what you have to say.

Being a private group, your Facebook friends can’t see what you’re posting and commenting unless they’re also members. Posts might show up on your newsfeed but only because you’re a member. It can be alarming to see extremely personal posts and comments show up on your newsfeed but don’t worry, they won’t show up on your friends’ feeds.

Mod Tip: If you have a question you’re not comfortable asking, reach out to someone on the moderating team and they can post your question anonymously.

If you see something, say something.

The Endometriosis Network Canada’s moderating team keeps an eye out for misinformation, bullying and content that just doesn’t belong in an endometriosis support group. However, if you notice something you think shouldn’t be in the group, please use Facebook’s ‘Report a comment or post’ feature. No one will know aside from the group moderators, who will review it and approve or deny based on group rules.

Online support groups exist for patients to learn, share and educate themselves about endometriosis. They’re places to find relief that you’re not alone, and should be safe spaces for all.

If you haven’t discovered our Facebook Support Group yet, come say hi!