facebook app on phone with text overlay - Building Community for Autoimmune Disease: How to Find & Join Facebook Support Groups

How to Find & Join Autoimmune Disease Support Groups on Facebook

Anna Disease Management & Treatment, Emotional Healing, Living Well with Autoimmune Disease Leave a Comment

phone with facebook app with text overlay - Building Community for Autoimmune Disease: How to Find and Join Autoimmune Facebook Support GroupsRemember that one time Facebook announced (on Facebook, of course) that Facebook is bad for mental health?

In fact, years ago, I gave up Facebook “for good” for this very reason.

I noticed that every day, I got sucked into this black hole of dramatic status updates, pictures of food, and reading downright mean political debates.

Despite how bad it made me feel, I couldn’t. stop. scrolling. and it was a complete waste of time.

One day, I hit my breaking point and quit cold turkey.  I didn’t just put my account “on hold.”  No, I deleted everything – all of my friends, pictures… everything.  And then followed with my Instagram account.

It felt so good.  FREEDOM AT LAST!  I swore I’d never return.

Then, I became a mom and I learned about these things called “Mom Groups.”  My eyes were opened when I was at the zoo, and a mom approached me, asking me if I had found my Mom Group yet.  Apparently, this was something important for motherhood.

In the search for my Mom Group, I discovered that the groups were for just about anything – moms of boys, moms of girls, moms of kids with food allergies, normal moms, hippie moms, crafty moms, moms of twins, Christian moms, Catholic moms, moms who went to the library, nursing moms, moms of moms.

First random thing you can think of… GO! 

It has a Mom Group.

(For the record, I only “joined” one mom group.  Ain’t nobody got time for all these mom groups!)

I saw my Facebook hiatus come to a sad end.  I made a new account, but this time, I promised to do things a bit differently.

Facebook CAN Be Bad for Mental Health, But It Doesn’t Have to Be

When Facebook made the announcement, it mentioned that using social media makes people feel worse if they are just bystanders… meaning, they just scroll through their feed, passively consuming random information without ever actually engaging in conversation.

But, they noted that using social media can be a more positive experience if you actually talk and engage with human beings!  Imagine that!

So, when I re-joined Facebook, I thought to myself… how can I be part of Facebook without it becoming a depressing, soul-sucking bad habit?

Better yet, now as a new mom with very little time on my hands, how can I make this into something that actually brings ACTUAL benefit to my life and not just a temporary distraction?

And then I was asked to join another Mom Group.

It was from someone who Frank knew and he relayed the message.  All I really heard was “Soandso wants you to join some mom group about something, so look for the invite on Facebook.”

I assumed this was going to be another make-plans-on-Facebook-and-then-meet-up type of group, but I was wrong.

It was actually a group of mothers on Facebook from all over the world that came together to discuss a very important topic:

Health.

Not knowing what actually happens in Facebook groups, I joined over 1,000 other moms and my eyes were soon opened to the power of these groups.

All of a sudden, Facebook became VERY useful.

No longer was the only mode of research limited to endless Google searching and reading books.  Now I had the power of asking a simple question, and having the responses of hundreds of interested and engaged people.

It was like I could supercharge my research and gain knowledge about my burning questions ten times quicker than I could before.

Let me give you an example…

Ask over 1,000 moms how to treat the chicken pox using all-natural remedies and you’ll get plenty of responses for what worked for them and what didn’t.

Ask over 1,000 people how they manage their autoimmune disease symptoms without pharmaceutical drugs, and your eyes will be opened to a world of possibilities.  I know this, because I’ve tried it.

In fact, with a decade’s worth of experience in treating my own autoimmune conditions, I can say without a doubt that Facebook support groups are one of the top sources of my learning – whether it be new products to try, topics to further research, and even new practitioners to follow or possibly consult with.

The possibilities are endless, and since we, as humans, are SO complex, the learning never stops.

Facebook Support Groups Can Help You Take Charge of Your Health

I have watched mothers come into groups, observe for a while, and then finally pipe up and say “My eyes have been opened since joining this group… I want to learn more about [insert topic here].  Where’s the best place to start?”

Facebook groups provide the opportunity to collect different opinions, stories, precautions, and ideas by simply asking a question.  It is truly a powerful tool.  Just look at the success of search engines.  Google practically runs the internet now!

How does information help you take charge?
  1. You are able to observe and learn from the experiences of other people within your groups.  Groups provide a great resource for “Lessons Learned.”
  2. You’ll learn not only HOW to ask better questions, but also WHAT questions to ask when you are working with your doctors and practitioners.  By reading the questions of others, you’ll learn possible topics to discuss that you may have never thought of before.
  3. You’ll be able to challenge your peers within the group if you disagree (in a respectful manner, of course), which is a huge learning experience and a great confidence booster for working with doctors you may not agree with.  Going in “armed” for every situation always leads to a better outcome because you won’t be lost or surprised by anything.
  4. You also get exposed to differing and/or challenging opinions which can toughen your skin so you can learn the best ways to argue, and navigate uncomfortable situations.  Understanding how to get the information or decision that you think is best is the essence of being in charge of your health.

Basically, you have a giant support system to help you become a more confident and educated advocate for your health.

So what kind of groups are there?

There are groups for just about anything.

Interested in using homeopathy?  There’s a group for that.

Essential oils?  There are PLENTY of groups to choose from.

Autoimmune disease or chronic illness support?  You got it.

Just like physical groups of people, the level of interaction will vary.  Some groups have great chemistry and even make t-shirts or other products with their group name.  Others are a little more business oriented.

You’ll also find groups that are associated with certain blogs, doctors, practitioners, etc.  So, Wellness Mama, for example, has a Facebook group for her readers.

How do I find a group?

Pick a topic that you have in mind and start searching!

Let’s say, for example, that you are interested in joining a group focused on Hashimoto’s Disease.  In the top search bar, type in “Hashimoto’s Disease.”

It will show a list of search results for various pages and posts about Hashimoto’s disease, but since you want to focus on groups, select “Groups” in the menu bar.

All of the groups that pertain to Hashimoto’s Disease will then be listed.

But don’t stop there!  Try some different wording in the search bar to make sure you know all of your options.  So, for example, you can also try “Hashimoto’s Thyroiditis,” and you’ll get another list with those keywords.

How do I join them?

Many of the groups are free to join.  Others may require you to pay a fee or buy a product (usually an online course of some sort) to join.  For the sake of this tutorial, we will be talking about the free groups.

To join, you can just click the “Join” button right next to the group, but personally, I like to vet the group a bit before becoming a member.

I do this by clicking on the group name and reading the description.  Many groups will post rules.  READ THEM ALL.  Some are very strict and if you don’t agree with the rules, then you’re better off finding another group.

If all seems good to go, then request to join buy clicking the “Join Group” button located above the description.

For some groups, after clicking that button, a questionnaire may pop up requiring you to give a few answers before you’re approved by the administrators.  These questions are usually in the ball park of:

“Why do you want to join this group?”

and

“Have you read all the rules and agree to follow them?”

But, you may come across some others, too.  This is just a screening process for the administrators to make sure they are letting the right people into their group (which is a good thing).

Once your answers have been reviewed, your request will (hopefully) be approved and you will now have access to the group.

How do I know if it’s a good group?

While some of the descriptions and rules can give a good indication as to what to expect, you’re not really going to know until you join the group.

You can choose to introduce yourself right away, or just standby and read some of the posts and comments.  Within a few days, you’ll be able to tell if this is a supportive group or a negative group.  If it seems negative, LEAVE.  It’s not worth your time.

If its demeanor seems positive, it’s likely a decent group (for now).  Things can change though as groups grow so just keep feelin’ it out.  You’ll know it’s time to leave when you start to feel uncomfortable on a consistent basis.

Once I’m in the group, what do I do?

Engage!!!  Remember, engagement is what makes social media a more positive experience.

As long as you are within the rules, you can ask questions to the members of the group, or use the search function to see if it has been asked before.

Answer other people’s questions, too!

TIP: Remember to be VERY specific when you ask questions.  Online interpretation of questions is harder than in person, so being as clear as possible can really help the members give the most appropriate responses.

You can also just share a positive story or provide encouragement.

Also remember to be mindful of what you’re sharing.   Even though some of these groups seem private doesn’t necessarily mean they are the best place to share your most personal information.  Ask yourself if you are okay with strangers knowing your information before you share it.

This group posts A LOT every day.  Is there anyway I can decrease how many posts show up in my feed?

YES!  You have control over the number of notifications you receive from your groups.

Currently, I am a member of over 20 groups.  I am actively engaged with only about 4 of them at the moment because I am choosing to stay focused on very specific topics.  To eliminate distraction, I shut off notifications from all of the other groups.

To do this, find the “Explore” part of the sidebar and click “Groups”.

Every group you are part of will show up in a list.  Click on the gear box icon located next to the group name and you’ll see the “Edit Notification Settings.”  Select it.

A box will pop up with options for notification settings.  You can choose to see all your posts, none at all, just the highlights (usually a few notifications a day), or posts from your friends that are also in the group.  I set this for “off” if I am not interested in the group at the moment and set all of my other groups to “highlights”.

But, there are some things you should know…

Groups on Facebook are still groups of people, and groups of people can sometimes cause A LOT of drama.

Specifically within the health related and chronic illness groups, there can be some very heated debates and really depressing stories.

Some people get into battles of proving who’s sicker.  Sometimes there are lurking “trolls” who are literally just there to stir things up on controversial topics (they are usually banned from the group after a few times).

And even the most holistic minded moms can get very vicious when someone mentions something about the “wrong” essential oils company.

My advice?  Ignore the negative and DO NOT GET INVOLVED.  Believe me, it’s not worth it!

If the group is a continuous downer, consider leaving it.  One of my favorite groups started off awesome, until heated debates became a daily thing.  I couldn’t quite put my finger on why, but every time I read posts from that particular group, I felt depressed.  I chose to leave it and don’t regret it.

Bottom line: if you’re going to spend time on Facebook – make sure it’s POSITIVE.

Now that you know about how to join them, I encourage you to go and find some groups for yourself!  Start with one or two and then add more as you learn.

I think you’ll be pleasantly surprised with how much you’ll learn.  The extra support you’ll gain as you navigate your health journey is vital for becoming your own advocate!

Most importantly, being your own advocate means YOU draw the conclusions about what YOU believe.  Discern the information as best you can, but don’t believe everything you read.  Move slow and figure out what works best for YOU and YOUR family, because in the end, that’s what matters.

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phone with facebook app with text overlay - Building Community for Autoimmune Disease: How to Find and Join Autoimmune Facebook Support Groups

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