By Nancy Harris Bonk and Jess Napier, Education Council for Headache Online (ECHO)
Living with migraine and headache disease can be exhausting, frustrating, and overwhelming. Having a good support network is a vital component of managing the disease and thriving in spite of it. Unfortunately, not everyone has easy access to this type of support. That’s where online communities come in.
“I never ask for this online, but I’m desperate,” recently wrote Roni Jones, a member of a migraine community Facebook group. “…If you could, please send up a prayer for me, or send some good vibes, juju, positive energy, whatever you feel comfortable doing. I’ll appreciate it!! I’m at the end of my rope and hanging on by a thread. The very last thing I wanted to be doing was being stuck in my cave again.”
Roni’s post was followed by dozens of comments of hope, encouragement, and perhaps most importantly, a shared sentiment that normalized her experience.
According to a 2018 survey by U.S. Pain Foundation of more than 2,000 patients with chronic pain, 56% said they were receiving support online. Though there are various platforms, Facebook is particularly popular. In fact, in 2019, Facebook said more than 400 million people were in groups that they found “meaningful,” which was determined by how much they engage in those groups.
A quick search for migraine and headache-related Facebook groups turns up approximately 90 results—each with a different purpose and focus area. The groups range from three members to more than 39,000.
Finding the right group for you Facebook has a variety of support group types: public groups, which can be seen and joined instantly by anyone; closed groups, which can be found by anyone, but members must request access and be approved to join; and secret groups, which do not show up in searches and are invitation-only.
These settings are typically determined by an administrator or team of administrators—often known as “admins”—volunteers who dedicate time to starting and running groups on a day-to-day basis.
“It means so much to know that my voice within that community was valued and considered a voice of reason and support,” says Shana Dixon, an administrator for the Chronic Migraine Awareness (CMA) Facebook group, which has more than 12,000 members. “And that’s what I want to be in all areas of my life. A voice for support.”
The focus of the groups can vary widely. For example, one group might be open to people with all types of migraine disease, while another might be geared specifically toward people with cluster headache. Some groups focus on being inspirational and uplifting; others are geared to sharing practical tips and articles.
In addition, the size of a group can influence a member’s experience. While large groups are very active and provide a breadth of information, it may be more difficult to build close connections than it is in a smaller group.
Getting the most of your group
Once you’ve joined, it’s a good idea to start by reading the group’s full guidelines. Every online community has a unique set of rules that may include but are not limited to: be respectful; be open-minded; and treat people the way you’d like to be treated. There may also be more nuanced rules, like avoiding discussion of specific medication brands and doses.
“I run a tight ship! I watch the board closely and look for potential issues before they start,” says Janna Leece Voigt, another administrator for the CMA group.
As a new member, reading through past posts to get a feel for the group dynamics and how it functions is a good idea as well. If you are looking for specific information, before posting your question, try using the search bar (located in the upper left side of a group) to see if it’s been answered already.
If you don’t see an answer to your question, or you simply want to make a comment or share information, then you can create a new post. (In some groups, posts may show up automatically; in others, the administrator may have to approve the post first. There is also a new feature recently launched by Facebook that allows members to submit posts anonymously, which can be especially useful for talking about particularly sensitive health issues.)
Once your post is live, you should begin to receive responses in the form of comments and reactions. The volume of responses will vary based on the details of your question, the group size, and other factors.
An admin acts not just as a rule-guider for the group, but also engages with posts from other individuals. This helps encourage discussion and demonstrates the group’s resourcefulness at all levels.
“I enjoy being an advocate and being able to send members in the right direction, such as providing a list of headache specialists in their area, or just being present to listen,” Voight says.
The limits of online support
While the information and support provided in online groups can be invaluable, it’s essential to keep in mind that any advice given in these groups, including treatment and medication experiences, is not a substitute for a conversation with your health care team.
Along the same lines, remember that everyone is different and what works for someone might not work for you and vice versa. In fact, when discussing treatment options, a popular expression in some groups is: “Your Mileage May Vary (YMMV).”
Another important factor to consider in online groups is that even though a group may be private and have rules about confidentiality, it’s still the internet—which means someone can share it. While most group members are very careful to respect confidentiality, be mindful of posting something you wouldn’t want made public.
Given the sensitive and highly personal topics being discussed, it’s no wonder that disagreements and squabbles often crop up in online groups. Many in the migraine and headache space are in tremendous pain, which can vary from day to day. Especially on a high-pain day, people may lash out.
This is where a good moderator/admin team will come into play. The moderators are there to help diffuse disagreements, ensure people are staying on topic, and uphold the guidelines. When members become combative, intolerant, or attempt to spread misinformation, a good moderator will handle the situation swiftly.
But keep in mind that moderators are volunteers. They may not have the bandwidth to manage every disagreement, or it may simply be their preference to take a more hands-off approach.
Beyond managing disagreements or disrespectful behavior, another complicated area for administrators is discussion of suicide and self-harm.
When this occurs, each member plays an important role in alerting moderators and admins as quickly as possible. While moderators and admins may not be trained mental health professionals, Facebook has an entire protocol on this topic, including resources to share and when to enlist outside support.
Group support and suggestions
Migraine and headache diseases are complex, falling on a spectrum from mild to severely debilitating. They almost always have an impact on emotional well-being, which unfortunately may take a backseat to addressing physical symptoms.
Online communities can help members feel supported, validated, and less isolated at any stage in their journey. They are certainly not a replacement for mental health care working with a trained provider, but for many, they are a lifeline for hope.
As one group member recently posted: “I am so very grateful for this community / family. …I know sometimes things seem bleak but remember your light is always shining on someone. I love you each for that.”
What does it take to moderate and lead an online community?
Learn more by being a part of the Education Council for Headache Online (ECHO). The ECHO program provides free training for the headache patient communicators that moderate online headache communities and create headache-focused content.
Learn more at headachemigraine.org/echo.
ARE YOU IN CRISIS?
If you are in crisis or considering harming yourself, we ask you to take one of the following steps immediately. Remember, you are not alone.
• Call 911
• Call a suicide prevention/crisis hotline: 800-784-2433 or 800-273-8255
• Text HOME to 741741
• Go to a hospital emergency room
• Veteran? Call 800-273-8255. Press “1” to reach the VA hotline