Breathing Easier: How Individuals with Asthma Find Family in Facebook Groups
Members of the Facebook group Asthma Support and Inspiration feel a strong bond with each other because of the group’s light moderation.
The 26 million Americans who suffer from asthma struggle to breath and live almost daily. Asthma, according to Medscape, “involves airway inflammation, intermittent airflow obstruction, and bronchial hyperresponsiveness.” The often incurable disease causes both daily inconveniences and compromised immunity. Symptoms, including wheezing, coughing, shortness of breath, and chest tightness or pain, often arise from environmental allergens or exposure to irritants. Facebook groups make it easier for asthmatic individuals to share experiences, knowledge, and emotional support.
Asthma Support and Inspiration is a private Facebook group with 4,855 total members as of March 13, 2021. The group serves as a highly interactive patient-led discussion forum filled with question-answer interactions and personal stories. Two thirds of the group’s members are women.
The group is an example of how a group’s founders, after initially being highly involved and setting a tone for a community, can back off and allow a community to thrive on its own. Now, the group “feels like a family where people check in on each other,” one member commented in a March 2021 post in the group.
Among the dozens of Asthma Facebook groups, Asthma Support and Inspiration isn’t the largest (25,339 members, founded in 2017) or the smallest (7 members, founded in 2020).
Created in January of 2017 by administrators Paul Eure and Ryan Williams, Asthma Support and Inspiration aimed to create a community led by and for those suffering from asthma and the varying health implications that come from the disease. In 2017 and 2018, both took an active role in the group with Williams personally welcoming new members in a shoutout.
More recently, however, the administrators’ activity has been minimal. Eure’s last interaction with the group was in July 2018 and Williams’s was in January 2019. Eure’s last interaction (an image) encouraged members to take on the duty of approving new members in place of administrators.
If you see someone waiting to be approved to join us, please give them the approval so they can join the conversation.
While admins and moderators do occasionally remove members, their light-handed approach helps foster a strong sense of community. Group members are able to admit people applying to join. A group member, interviewed by Messenger, noted that:
I feel like the group really belongs to us. We admit people, respond to them, start conversations, and many things in between. The environment here is very different than some of the other groups where all of the moderators are pushing for members to engage in conversations that they don’t want to have. Members both start and perpetuate virtually all conversations. The conversations are spontaneous, fluid, natural, and intimate. I feel like the group exists for the members.
One moderator, via Facebook messenger says she occasionally kicks members out of the community for severe violations. The rules discourage prejudice, harassment, shaming members for symptoms, soliciting money, posting triggering images, and selling or buying medications.
Links to surveys or soliciting input for research are also forbidden. (The group makes an exception for links to Studykik, which is a resource for drug trials.) Barring researchers contrasts with the policies of other large asthma support groups like Parents of Children with Asthma (9,796 members), Asthma Triggers, Cures, Diets and Natural Remedies Research Group (3,532 members), and Asthma Information & Support Group (9,214 members).
The group’s content policy can be found under “About This Group” and provides information on consequences: “First-time offenses will get your post/comment deleted, repeat offenses (or REALLY bad first offenses) will get you banned from the group.”
Among the 70+ English language groups focusing on asthma, Asthma Support and Inspiration encourages more patient led conversations and interactions in comparison with other groups like Asthma Circle Of Support & Prevention And Living With Asthma (3,022 members), in which administrators or moderators initiate and encourage member interaction. Groups like Anti Allergies, Asthma & Anaphylaxis Worldwide (1,635 members) feature posts that are predominantly educational, emphasizing facts, statistics, or news impacting individuals with asthma. In contrast, the content in the discussion section of Asthma Support and Inspiration is composed entirely of content from and for patients or their caregivers.
Asthma Support and Inspiration is easier to get into than other Facebook groups like Asthma & Anxiety (764 members) or Adults with Asthma (650 members), which make applicants answer questions.
Asthma & Anxiety asks:
- How long have you had asthma?
- What are you looking for from this group?
Adults with Asthma asks:
- Who do you know who has asthma?
- What do you want to get out of this group?
- By selecting YES you acknowledge that we are a support group geared towards adults living with asthma. We are not here to diagnose or suggest treatments.
- We may occasionally offer ideas, but you should ALWAYS consult your physician.
Despite the ease of entry, Asthma Support and Inspiration maintains an intimate and patient centered community via moderators.
A group member interviewed on Messenger comments on the group’s unique support:
A lot of the other groups I’ve joined seem to care more about asthma as a condition than the people with asthma and their unique experiences. I didn’t feel comfortable in groups dominated by people that viewed people with asthma, like me, as sources of money for new products or data points in a research paper I’d never see. Here, I found a community where discussion was filled with people talking and asking questions about the everyday reality of asthma. I felt like my experiences weighed more than my condition. The group offered me support while also making me feel like I wasn’t defined or ruled by asthma.
Another member, via Messenger, highlights the community’s responsiveness and constant support.
I don’t have to worry about waking up my Mom or sister at 3AM only to get mediocre responses. With this Facebook group, I post something and get responses within the hour. Someone always seems to be awake. Plus, their advice is better. They’ve been through what I’ve been through. Just seeing how supportive and positive other people are in other comment sections or answers makes me feel more comfortable sharing and responding to others!
Similarly, another member via Messenger explained how the group tackles all topics in comfortable and intimate ways.
I’ve always been the only one to go through the pain or stress of not being able to breathe the way I want to. Some friends did have asthma, but no one really wanted to talk about it. Conversations about inhalers and mucus aren’t exactly sexy. Sometimes I even got made fun of for it. However, here I talk about mucus and everyone seems to groan in mutual understanding before offering advice and support. They just get it. I can be myself and talk about all the uncomfortable or scary things that come with severe asthma.
COVID-19 has been of particular interest for group members over the last year. For example, one member asked:
I just tested positive for covid and I have severe asthma. I’m so worried. Has anyone had this?
The question generated 60 answers over the course of a week, including well wishes, prayers, advice, motivation, and inspiration.
I don’t but we’re all here for you. Hugs.
Keep your rescue inhaler close by. And see if you can get a call in to your doctor maybe they have some advice? And if you feel worse don’t hesitate to demand help. How are your symptoms today?
I have asthma and tested positive for covid December 17. It’s different for everyone, but for me I had viral pneumonia. Today I’m still having the long hauler symptoms.
Praying for you don’t lay too long on your back
How are you feeling today?
The member’s initial request for ssupport and advice spawned numerous side conversations within the comment section about COVID and asthma, including vaccine questions, O2 sensors, and other concerns.
The images that Facebook autogenerates from short posts are common in this group. The images differ from images used in other groups like Asthma Circle Of Support & Prevention And Living With Asthma, which depict people, colorful diagrams, and various flyers.
A member, below, utilizes an image question in Asthma Support and Inspiration :
The question generated 74 answers and 20+ comments within the span of a day. The responses provide a wide variety of answers, anecdotes, and emotional support. A member, via Facebook messenger, details how beneficial anecdotal stories within the posts and comments often presented in images can be in calming nerves.
The Covid vaccine freaks me out, quite honestly. It’s scary. I don’t have the best reactions to the flu shot (sore arm, sometimes fever), so I was terrified about what the Covid vaccine could do. I’ve heard of people’s reactions, but most don’t have asthma. I didn’t know what to expect and if my asthma would impact symptoms or safety. When reading through the replies, I felt a lot safer and steady knowing that these people (with asthma like me) had similar experiences.
Asthma Support and Inspiration’s uniquely patient centered discussions and support connects individuals suffering from asthma in ways that many members say “feels like family”.
