For Chrissi Kelly, it all started with the toothpaste. Next, it was the shampoo, then the bathroom cleaner. As she scuttled around her bathroom one day in 2012, sniffing everything in sight, her darkest suspicions turned out to be true: She had fully lost her sense of smell.
It’s become a common scene now, with total smell loss (also known as anosmia) a telltale COVID symptom, but back in 2012, when Kelly lost her smell after a bad sinus infection, she felt totally unmoored: This could happen to people?
“At that moment, there’s the reasonable person in your head saying ‘Calm down, you’re going to be fine,’ and then there’s the alarmist person in your head pressing the panic button, saying ‘Oh my god; oh my god; oh my god,” Kelly explains.
A doctor’s reassurance that she would be “fine” smoothed the edge of panic for Kelly, who says she kept thinking “maybe tomorrow; maybe tomorrow; maybe tomorrow.” For years, though, tomorrow never came. Her experience lasted two years, with her ability to smell fluctuating. This led to a period of intense depression before she ultimately reached a point where she felt as if she had “a good quality of life” with her existing sense of smell.
“I just didn’t feel like myself anymore,” Kelly explains. She might have felt alone in her experience at the time, but a period of depression is a common reaction to smell loss, according to doctors and researchers specializing in olfaction (also known as smell), like Dr. Zara Patel. Patel’s an associate professor of otolaryngology, a surgical speciality focused on the nose, ears, and throat, at Stanford University.
But Kelly didn’t know any of this back in 2012. After completing extensive courses on smell training in order to recover her own smell and learn about the science behind it, Kelly later set out to find and build a community for anosmics. In 2015, once she had “a functional sense of smell,” Kelly formed a Facebook group for other people experiencing smell loss, precisely the kind of outlet she didn’t have when she needed it the most. The group was ultimately just one aspect of what would later become AbScent, a registered charity that Kelly founded for those experiencing anosmia.
For years, the Facebook group Kelly formed was a relatively niche yet helpful forum: Just what smell loss patients needed when they needed it, but largely out of sight for the population at large.
Then came the pandemic.
The COVID rush
As more and more people around the world started experiencing smell loss as a COVID symptom, they flocked to the group for advice and support. The number of group members climbed so high in March that the AbScent team had to form a separate Facebook group just for people who experienced smell loss because of COVID. As of this writing, that group has over 23,000 members.
Two of those 23,000 members are Kirstie and Laura Goodchild, sisters living in Keighley, England. They both lost their sense of smell in April, before smell loss was an official COVID symptom in the U.K. That meant though they had the rare ability to find solidarity with each other, since they were experiencing similar symptoms around the same time, they still found themselves feeling alone and confused.
Kirstie focuses on science-related fields at the University of Cambridge, and she ran through old lessons on olfaction to see if she and Laura could self-diagnose themselves when their Google searches proved inadequate.
Eventually, though, their dive down the digital anosmia rabbit hole led them to the Facebook group, which felt like a revelation. “We clicked on this link and it almost changed our lives, just reading other people talking about what we were experiencing, and having people understand how much it does impact your life,” Laura says.
Even though the correlation between smell loss and COVID-19 was more widely known when Anna Kate Poole contracted the virus in July, the group similarly provided something she wasn’t getting anywhere else, online or in her day-to-day life.
“We clicked on this link and it almost changed our lives”
On one hand, it was a place to find “compassion and understanding” for a difficult to describe experience. No matter how supportive the people close to her were, Poole explains: “You just cannot explain it until you experience it … They don’t have smell loss. They can’t understand.” Just as crucially, though, Poole, as well as the Goodchild sisters, felt it was more trustworthy than a random Google search would be, given its advisory board full of olfactory experts.
Kirstie felt as if “she couldn’t really understand what was going on,” until she found research posted on the Facebook group, which helped her grasp the science behind smell loss. Learning more made her feel more comfortable since she could actually explain the science to other people.
What makes it work
Though the sudden growth of the AbScent group was unique to the pandemic, Dr. Lindsay Young, a University of Southern California professor who studies social networks and public health and is not involved with AbScent’s Facebook group, maintains the use of social media for health related support and information seeking is a much longer standing phenomenon — and one with big implications for public health.
People have long turned to their Google search bars to self diagnose (think: going down a WebMD spiral anytime you have a headache), and they’ve simultaneously turned to social media for peer support, Young explains. She isn’t surprised by the emergence of a hub like AbScent’s.
She sees online communities (like AbScent’s) that are dedicated to providing both emotional support and medical information as a natural outgrowth of those two trends. But effectively running a group of this kind is a different story. “The devil is in the details,” Young says.
For starters, privacy is crucial in these kinds of groups. By way of example, Young points to to the nearly 21,000-member-strong Facebook group PrEP Facts: Rethinking HIV Prevention and Sex, which is for people who are HIV positive to ask questions about PrEP. Privacy allows members to actually feel comfortable asking questions, and the same likely goes for AbScent’s group, Young explains. To join AbScent’s group, potential members must answer a number of basic vetting questions about their symptoms to ensure they’re actually experiencing COVID-triggered anosmia. It’s meant to be a safe, troll-free space, and AbScent executive director Sarah Oakley, Poole, and the Goodchild sisters feel as if it’s largely functioned that way.
While Young concedes in a follow-up email that “trolls will be trolls,” and could always find a way to sneak under the radar of any private Facebook group, she agrees vetting questions ultimately “can help group admins screen people before admitting them to the group,” which is particularly critical for groups centered on sensitive topics.
She explains that for “better or worse,” Facebook is often the default for hubs of this kind because of its formalized closed group structure. Compared to other social media platforms, Facebook, loathed as it may be, offers one of the most straightforward ways to form a private group, considering apps like Instagram, TikTok, and Twitter don’t have the same private group capabilities. “The breadth of privacy enables a kind of trust building,” Young says.
Privacy isn’t the only necessary ingredient though, in Young’s telling. Without a set of guiding principles for what kind of behavior can and cannot appear in the group, a clear moderation process, and, ideally, medical professionals involved somewhere in the group’s main organizing structure, Young says an online hub of this nature could quickly turn into a giant public health red flag. AbScent’s group has these crucial components. “You could clearly imagine in your head how this group, if run differently, could go horribly wrong,” Young says.
Misinformation about coronavirus and its treatment has run rampant throughout the pandemic, and that extends to COVID-19 and smell loss, Kelly and Dr. Alfred-Marc Illoreta, an otolaryngologist at Mount Sinai Hospital in New York, note. By way of example, they both point to the viral “burnt orange” trend on TikTok, in which users report regaining their smell after cooking an orange over an open flame, peeling off the skin, mixing it with brown sugar, and eating it. Illoreta (and other medical professionals) caution against trying this trend, but notes that in the desperation that comes with abruptly losing a sense, people may be willing to try anything — and there’s plenty of misleading information online for them to confirm their most out there beliefs.
“You could clearly imagine in your head how this group, if run differently, could go horribly wrong”
A Facebook group like AbScent’s, which is run by the charity itself, operates differently than simply Googling does, though. It’s not that quick-fix solutions never popped up in the group. But a tightly run moderation process, in which AbScent’s core team of medical professionals — which includes ear, nose, and throat doctors and other smell and taste specialists — monitors proposed posts from group members before they go up, has ensured the page doesn’t look like your results after a frantic, late night Google search session about the medical scare du jour. For example, certain words, like “supplements,” might contain misleading information (often unintentionally) about recovery methods, Oakley explains. Posts with words the AbScent team deems worthy of flagging aren’t automatically banned, but they get extra scrutiny before going up.
As the group grew, so did the need for more moderation. Once more and more people became familiar with anosmia, people started joining the very first day they experienced smell loss, Kelly and Poole observed. That may have been useful for those new members, but for people who were already in the group, like Poole, new, introductory posts were drowning out the information that was more relevant to them. A post reading “I just lost my smell and taste. Has this happened to anyone else?” doesn’t offer much emotional or medical support to the others in the group, cathartic as it may be to the poster, Oakley explains.
Additionally, Dr. Patel notes COVID anosmia patients who recover naturally seem to follow a similar timeline: People might recover their smell temporarily, only to later develop parosmia (the distortion of smells) or phantosmia (smelling something that isn’t there at all). That timeline is to be expected, but it also led to unhelpful posts for people still working through their smell loss. “They’re like, ‘My smell has returned. Here’s what you need to do.’ That probably isn’t going to apply to us, who have been here for 9, 10 months,” Poole says.
To try and counter this, AbScent moderators started heavily limiting posts that weren’t fostering new, productive conversations for all group members, including the long-haulers. A post about, say, the specifics of parosmia triggers that haven’t yet been discussed in-depth would probably make it on, while a post about a so-called remedy that “suddenly” let someone regain smell likely wouldn’t.
Though Oakley acknowledges that controlling posts “quite tightly” means “you’re going to have a less personal experience as a group member,” she felt it was ultimately necessary to do so as the volume of repetitive posts continued to grow, so that posts were still “meaningful for most people in the group.”
Young also sees some form of moderation necessary, for the sake of medical accuracy, but maintains any kind of stricter moderation on a given group could have trade offs, since groups might lose out on the kind of conversation between group members that make a group like this beneficial in the first place.
“A problem of scope”
Running a group this large was never going to be easy, Young says, and there’s plenty to learn from AbScent’s group and its management. In a world permanently altered by our current pandemic era, whether through lasting mental health concerns or the ramifications of racial disparities in vaccine access, online groups providing blended medical and emotional support will likely continue to exist, Young notes.
In imagining an ideal set-up for these types of groups, she points to a dialogue that occurs in public health social support literature, which typically differentiates between instrumental support (which provides relevant health information), and emotional support (like peer-to-peer communication between people with the same symptoms).
If an online group is focusing on either instrumental or emotional support exclusively, it’s going to look slightly different. “They’re both important, but they have their own role,” Young says. When the two are blended, that’s when trade offs might be made, which was the case for a time with AbScent’s heavy moderation. Though members of the group have access to a wide variety of up-to-date information about smell regeneration methods or common trigger foods for parosmia, they might lose out on some of the more in-depth, peer-to-peer communication that could come from less regulated posts, like making connections through casual introductory posts.
In an ideally run group, Young explains you’d want to “encourage less hierarchy, and more horizontal flows of information being passed between members of the group,” so that emotional support stays foundational. “But because of [the pandemic], I totally get why [AbScent is] doing it the way that they are, because it’s a problem of scope. You have just a lot of people here, and it just gets really muddy,” she adds.
Oakley agreed via a follow-up email that while posts did indeed get “muddy,” moderating them excessively could seem counterintuitive to the goals of a social media forum. “However, as the instigators of this particular forum, AbScent feels a responsibility to ensure group members get correct information,” she writes.
For AbScent, commitment to that responsibility ultimately pulled them away from Facebook a bit. Oakley explains over email that the team ultimately realized they “couldn’t change how people use Facebook” naturally, so they needed to look into alternative platforms that could be moderated and managed in a way that better met “the different needs of the growing and diverse community.”
In January, the organization set up an additional community, using a platform called Mighty Networks. Here, people joining the “AbScent Network” can directly connect with others based on particular shared anosmia causes (such as head injury or COVID-19), trigger foods (for those experiencing parosmia), or other complicating conditions, like pregnancy. For example, if people want to connect with others based on their location, Oakley explains they could join a smaller circle of communication with other members about location-specific concerns without drowning out the entire group, like on Facebook. “The community starts to connect itself,” Oakley explains.
The new platform is still moderated, but there’s no moderation about post types, so people can still upload the cathartic “I just lost my smell; I feel so alone” posts, while others can choose what they see and what notifications they get, resulting in less “repetitive post fatigue,” Oakley adds via follow-up email.
Meanwhile, the Facebook group now runs with less moderation and intervention from the AbScent, which means Facebook group members can still “enjoy the benefits of horizontal information flows and personal posts,” and those who want more “tailored interaction” can turn to the other platform, Oakley writes.
Despite the struggles that were bound to pop up for a group of AbScent’s size, Young acknowledges that no matter what, AbScent’s Facebook group still benefits those on it, considering it as an outside observer. “I think the bottom line is that it’s always good to see community being built, and creating spaces for people to come to. Maybe…just to be able to see that there’s [23,000] other people who are experiencing this could just make [you] feel better.”
Indeed, for the Goodchild sisters and Poole, merely finding other people online going through the same thing as them often felt like comfort enough. “Even though we are sisters, it was still amazing just to hear other people talk about it, and I’m just so glad we did find that support group,” Laura says. “It’s been a massive comfort to both of us over these last months.”