Support. Support is one of the most important things to have when you have T1D or have a loved one who has it. But what if you don’t have family around that can help? What if you don’t have people around you who want to learn? What if no matter how supportive your friends and family are, sometimes you just need to talk to someone who understands? Someone who has been in your shoes? Many people turn to T1D Facebook groups.
The DOC (diabetic online community) is vast with many blogs, websites, podcasts, and support groups. Facebook has become a place people turn to find others in the same situation who can give advice, troubleshoot, or lend a sympathetic ear. But how do you find T1D Facebook Groups?
Finding T1D Facebook Groups
There are a couple of ways you can find T1D groups on Facebook.
If you’re in a group or two already, you’ll probably hear about others from other members. The problem with this is that it’s pretty random unless you specifically ask, and some groups discourage mentioning other groups.
Another option is using the Facebook “search” tool. But it can be hard to find groups with this tool. If you don’t know the exact name of the group, you may not find what you’re looking for.
Luckily for you, I have compiled a list of over 200 T1D Facebook groups.
How to Join T1D Facebook Groups
Once you find a group that you’re interested in, there is a bit of information you’ll want to check out before requesting to join the group.
You can see what kind of group it is: public or closed (we’ll talk about the difference later).
You should be able to see who the administrator(s) are as well as some of the members. If you have any “friends” in the group, it will show you.
The third, and most important thing you should look at, is the description. This is where you’ll get a feel for how the group runs and if it may be for you. Generally, if the group has rules, they are in the description.
So, before you join a group, make sure it’s a good fit. For instance, don’t try to join a group for adults with diabetes if you are the parent of a diabetic child. It’s very likely that you would get denied anyway.
And if you’re not sure, ask an admin.
Admins can be found by clicking on “Members” just under the cover photo for the group. Then click on “Admins” to see who runs the group.
If you have any questions or your request to join is taking a long time, you can send them a message. Most admins check their messages frequently.
When there is more than one admin, it’s pretty simple to figure out who the main one is. If the original creator is still an admin, it will say “Created group on…”. If the original creator is not an admin, you can look at when each admin joined the group. There may be name(s) listed in the Description or the Pinned Post (you can only see the pinned post if you are a member).
Running a T1D Facebook group is a big job. Many spammers try to join these groups to sell things to people (like fake cures). Because of this, and numerous other reasons, most T1D groups have a vetting process.
They may need to take a quick look at your profile to make sure it’s not fake. They may send you a private message to ask you a couple of questions. If they do this, make sure you check your “Message Requests” folder for messages because they don’t always come up in your regular notifications.
Each group has different rules. Some don’t allow swearing, some don’t allow the exchange of medical supplies, most have a strict “be respectful” policy.
The rules are usually in the group description, but once you are a member of a group, you should also check the “pinned post” to see if there are any additional rules or guidelines.
It is up to the admins to decide what falls within the guidelines of their group. They can add to or change the rules at any time as they see fit.
They can also delete or turn off commenting on any of the posts within their group. (This is usually used to stop a controversial post from getting out of hand).
If an admin feels that you are not following the rules of the group, they may remove you. Some admins give you a warning, and some don’t. Every group is different.
If you see something that you feel goes against the group’s rules, tag the admin or send them a quick PM about the post in question. Some groups are very large and admins cannot read every post and comment in their group.
Public, Closed, and Secret Groups
The 3 kinds of groups you will see are “public”, “closed”, and “secret”. In the T1D community, closed is the most common to find. But here is a rundown of each type:
These groups tend to be smaller, even if the topic is broad. The reason for that is simple… there is no privacy in public groups.
Anyone can see all of the posts and members in a public group. Which means, even people who are not members can see anything you post.
Non-members are also able to “like” or share any post from the group. But only members can comment on the posts.
The benefit of a group like this is to spread information. Maybe it’s a group petitioning for CGM coverage, or a group all about recognizing T1 symptoms.
As far as support groups go though, public is not generally what people are looking for.
Closed groups are semi-private. A non-member can only see the description, the admins, and some of the members. They can’t see any of the posts within the group.
The only “friends” that will see your posts are people who are also in the group.
This is the most common type of T1D Facebook group because members have the ability to vent and talk about things they may not want everyone on their personal profile to see.
Secret groups are not searchable. Even if you have the link to the group, it will not come up in a search.
It just looks like the link you clicked on isn’t working.
To get in one of these groups, you have to be added by someone who is already in it. Occasionally, there will be a public group that is used as a “front door” to a secret group. You join the public group, and the admin chooses if and when they will add you to the secret group.
Tagging and Sharing
Often, when you see a post that is of interest to someone else, you want to tag them. This is where you comment with their name to notify them so that they will see the post.
Unfortunately, if the person you’ve tagged is not in the group, they will not be able to see the post.
You’re left with a couple of options.
If you’re wanting to share a link with someone, click on the link and share from there. You can also click on the word “post”, “photo”, or “video” to bring you to the original.
Sometimes when a link is posted in a T1D group, it has a share option. If you use this option, it will not share the original link. Because you’re sharing it from a closed group, most of these links will only appear to other members of the group, even when you share it on your own timeline.
If someone writes something that you would really like to share (maybe a poem or something that touches you), simply ask the person if you can share it.
Taking screenshots or copy and pasting is not allowed in closed groups unless the original poster has given permission.
What do “Bump” and “Following” mean?
You might see a post from someone asking a question and the only comments are “bump” or “following”.
Like any other social media network, Facebook works based on complex algorithms. Basically, it tries to show you more of what you like and less of what you don’t like.
Because of this, sometimes posts get lost in the shuffle. If a post is sitting there for a while with no one commenting or “liking” it, you can type “bump” in the comments to get Facebook to show the post to more people.
You’ll generally do this if it’s your own post and you aren’t getting responses, or if you come across a post that you are unable to answer but you want to help draw attention to the post so someone else can help.
Some people get upset, especially in the larger groups, when no one answers their questions. It can seem like they are being ignored. So if you see a post that is not getting any interest, do the person a favor and “bump” their post.
Following means you are also interested in the answer. When you type “following” as a comment, it tells other group members that you are interested in what others are going to say.
By typing a word in the comments, you are ensuring that you will get future notifications on the post. Another common way to follow a post is to type “.” as a comment.
Starting your own T1D Facebook Group
There are over 200 Groups in this T1D Facebook Groups list I’ve put together. And there are many more out there.
But you still may not find what you’re looking for. It might make you want to start your own group.
Starting a group is easy. All you need is a name and a second person who wants to be a member.
Maintaining it is the hard part. Finding other members and keeping scammers out can be very time consuming.
If that doesn’t phase you, then my one big tip is to make sure your name is clear and is something people would search for. Don’t come up with a cute name or something with a pun. Be straightforward. Otherwise, no one will find your group.
And when you start your group, make sure you send me a message so I can add it to my list!!!
Happy Carb Counting!