The Facebook groups devoted to anosmia and other kinds of smell disorders are, like everywhere else on the internet, places of good and bad. I started looking around in them nearly seven years ago, and my first experience in a large and well-established group was to be shouted down. I had asked if anyone had experience with smell training.
“I tried that once, don’t bother”. “It’s a scam”. “They just say that to give you false hope”, and my favourite “doctors just fob you off with steroids and smell training.”
I’m dismayed to say that even with all that we’ve learned about smell disorders since 2012, there is still much misinformation out there. I moderate my own AbScent Facebook group of over 1000 members, and I’m careful about content. It should be reliably sourced, and when people make suggestions about interventions, I need to be sure these are proven or at least not harmful. In other groups, I stay as an observer, mostly just listening.
Three issues come to mind. The first is bias. The people that come into the anosmia groups do so because they are distressed about their condition. An older group has a “long tail”; lots of older members but new ones coming in all the time. In the group, a recovered person might no longer take part in the discussion (having turned off notifications). They leave behind a more concentrated pool of those still needing support. The voices of the recovered are rarely heard. This fuels the negative voices of those who want to assure newbies that any ideas of recovery or adjustment are futile.
A second problem has to do with the increasing level of information over a short period. I’m thinking here about the many pieces of research published since I began reading in earnest about smell loss in 2014. When many long-term members were diagnosed, often years ago, the knowledge of smell disorders was not what it is today. Their doctors maybe didn’t have adequate information then. The opinions of those doctors from the time of diagnosis have been set in concrete in the minds of the longer term members. So the information the experts-by-longevity are doling out in the discussion groups is sometimes outdated. They don’t consider themselves well-equipped with often outdated information.
The third is genuine trolls. One that I am aware of likes to pitch in from time to time with messages to newbies in “his” group about giving up all hope “because doctors are lying to us about chances of recovery”. This troll is very angry about their own smell loss and needs to exercise this anger on the vulnerable who are just coming in. In addition, the troll wants people to know that they are fully qualified to make statements about outcomes. Like those mentioned above who dispense outdated information, in the mind of the troll, longevity = authority, with a healthy dose of intimidation on top.
Let’s take a look at some of the kinds of misinformation that get spread. In addition to perpetuating the myth that there is no hope, there is misunderstanding about the differences between different kinds of smell loss. The ones with polyps think they are in the same position as those with head injuries for instance. Idiopathic parosmia sufferers assume they are similar to post-viral parosmics. When someone posts a link to a tabloid newspaper with a headline about the likelihood of anosmics to experience mortality within five years, everyone is concerned because they want to identify with every post. Unproven dangerous home remedies, such as rinsing the nasal passages with neat lime juice, can cause great harm.
I continue to keep an eye on the anosmia discussion groups on Facebook because I feel it is my duty, as a patient advocate, to comment where harm could be done. Facebook discussions are a vital area of patient support, and one that has to be used wisely. The best way forward is to provide science-based information presented in a way which is clear, reassuring and informative. I ask that those long-standing members in my own Smell Training group add their comments when newly arriving patients query us about what they can expect. Especially their experience of adjustment, healing and return to quality of life. Here’s what the AbScent Facebook community can expect: quality information, a supportive atmosphere and a well-balanced view of possible outcomes.