Health Community Forensics and What to Do
Health issues can be isolating. For many the comfort of online connection with other patients in similar situations is critical to staying emotionally strong enough to engage with care. Communities of patients who “get it” are valued across a variety of health conditions. These communities breakdown isolation and help patients feel understood. Sadly these communities occasionally also deal with individuals who pretend to have the health issue the community cares about.
Munchausen by Internet
There are a few names for ‘faking it’ behavior, some call them Trolls and others use the term Catfish after a 2010 movie and MTV series.(1) There is also a more specific scientific term, Munchausen by Internet. Maia Szalavitz has written articles at Time on the the topic that are a good way to understand the phenomenon; Munchausen By Internet: Faking Illnesses Online, Nov. 30, 2012 (2) and Phony Cancers and Self-Inflicted Acid Attacks: A National Outbreak of Munchausen’s? Sept. 22, 2010. (3) Faking it, it seems is it own form of illness.
Pulman and Taylor write that, “Munchausen by Internet occurs when medically well individuals fake recognized illnesses in virtual environments, such as online support groups.” (4) Their paper, Munchausen by Internet: Current Research and Future Direction, “focuses on the aspect of Munchausen by Internet in which individuals actively seek to disrupt groups for their own satisfaction.”
This behavior exists and online health communities need to be able to identify and appropriately deal with occasional cases of Munchausen by Internet. While anger, stemming from a deception that belittles communities members value is a natural response, it may not be the best recourse. But before talking about what to do maybe it is a good idea to chat about how to spot it.
Health Community Forensics
There are some signals be aware of in health communities. Maybe the first is simply to understand the condition and be aware of comments that seem to lack first hand experience. Another clue may be participation strictly in the heath community and have no other social media presence and / or strictly participating on the topic of the disease in social media, no favorite song, movie, book or other sign of a real life outside the disease. Look at the time line to see if there is a digital footprint before the time a possible troll joined a health community. These are signs, not proof and there are legitimate community participants who may choose to limit other social media activity.
The highly publicized case of Notre Dame linebacker Manti Te’o inspired a number of news stories on how to identify a catfish. Forbes writer Kashmir Hill offers some good advice:
- “Beware of tales of ‘devastating accidents or illness.’” Ok by definition some of these are in communities of devastating illness but keep an eye out for the accidents. Not that they don’t happen to people with devastating illness but it may be a clue.
- “Get your digital stalk on.... If the digital trail is sparse, be suspicious. Do those friends look real?”
Feldman (5) as cited by Pulman and Taylor suggest as means of detection:
- Posts consistently duplicating material in other posts, books, or health-related websites.
- Characteristics of the supposed illness emerging as caricatures.
- Near-fatal bouts of illness alternating with miraculous recoveries.
- Fantastical claims, contradicted by subsequent posts, or flatly disproved.
- Continual dramatic events in the person's life, especially when other group members have become the focus of attention.
- Feigned blitheness about crises that will predictably attract immediate attention.
- Others apparently posting on behalf of the individual having identical patterns of writing.
These fake cases can damage the trust of online communities and so risk the credibility of peer to peer support. Pulman and Taylor state:
A troll can disrupt the discussion on a newsgroup, disseminate bad advice, and damage the feeling of trust in a Web community. Furthermore, in a group that has become sensitive to trolling—where the rate of deception is high—some honest but naïve question can be quickly rejected as trolling. This can be off-putting to a new user who is immediately bombarded with accusations when venturing a first post.
The last, a distrust of new members threatens the very reason why peer to peer communities exist. Communities should be as aware of to the risk to communities from over vigilance to potential cases of Munchausen by Internet as the trolls themselves.
What to Do:
Admit it, you have been thinking, is there something wrong with this person? Apparently there is. Focus on your community’s need to respond to protect the integrity of peer to peer support. Pulman and Taylor summarize suggestion by Sabino and Fordtran: (6)
1. Let the patient know what you suspect but without outright accusation.
2. Support the suspicion with facts.
3. Provide empathetic and face-saving comments.
4. Avoid probing to uncover the patient's underlying feelings and motivations so as to minimize disruption of emotional defences that are essential to her function.
5. Assure the patient that only those who need to know will be informed of the suspicion of factitious disease.
6. Make sure the staff demonstrate continued acceptance of the patient as a person worthy of their help.
I fear that public confrontation may create a challenge. It may create an interest in the troll coming back and trying again. The point is not to confront, out , punish or harm the person faking it. The goal is to protect the integrity of patient communities, to help peers support peers. A flame festival with a troll risks burning down the home of real peer support. I suggest that focusing on nurturing what is real should be the goal when dealing with Munchausen by Internet.
What matters is the real community.
4 Andy Pulman, MA and Jacqui Taylor,BSC, MSc, PhD, Munchausen by Internet: Current Research and Future DirectionsJ Med Internet Res. 2012 Jul-Aug; 14(4): e115. Published online 2012 August 22. doi: 10.2196/jmir.2011
5 Feldman MD. Munchausen by Internet: detecting factitious illness and crisis on the Internet. South Med J 2000 Jul;93(7):669-672. [Medline]
6 Savino AC, Fordtran JS. Factitious disease: clinical lessons from case studies at Baylor University Medical Center. Proc (Bayl Univ Med Cent) 2006 Jul;19(3):195-208. [Medline]