Where can chronic pain sufferers find a safe and comforting place in society to openly voice their experiences and fears — overcoming their sense of isolation? A place where others will understand their pain and anguish, and respond with nonjudgmental acceptance? A new study examines the dynamics and potential benefits of Internet chatrooms in helping persons with chronic pain.
Writing in the journal, Cyberpsychology, Behavior, and Social Networking, Karin Becker — from the University of North Dakota, Grand Forks — describes how chronic pain may play a paradoxical role as something that cannot be denied by the individual, but also often cannot be openly discussed without repercussions of social stigma for calling attention to one’s suffering. Hence, persons with chronic pain may become discouraged from voicing their pain and, in effect, are left without a voice.
Becker studied the online interactions among 18 registered participants (persons qualifying with various chronic pain conditions) and 2 facilitators during a 6-week chronic pain management workshop supported by the Better Choices, Better Health® website, a project of the National Council on Aging. Their posts and subsequent responses to each other provided some insights into participants’ experiences, their collective understanding of living with pain, and how they support each other.
A first theme that emerged was the need for validation. Participants wanted assurances that others related to their situation and that their own chronic pain experiences were not truly isolated events. Personal revelations of fear and apprehension were typically met by responses corroborating the expressed emotions: eg, “You have every right to be angry. I’m angry at my problems too.”
The thread of responses created a community of like-minded voices. One person’s sharing a difficult emotion opened the floodgate for others to do likewise. Becker notes, “The responses showed empathy and understanding that comes from an audience that can relate.” Participants offered advice that was more authentic and sincere, as opposed to always credible, than advice from healthcare professionals.
The second major theme in the online interactions was encouragement. “Once the legitimation of their condition had been realized, users wanted emotional support,” Becker observes. “Although the concerns and emotions varied, the responses were unanimously supportive and uplifting, encouraging [participants] to stay positive and to forgive themselves.”
In lieu of physical touch, chatroom interactions allowed for exchanging plenty of “cyberhugs”; that is, “the virtual support that is so needed in the lives of chronic pain sufferers,” Becker affirms. Through such encouragement, and validation of their experience, participants could gain a sense of empowerment. “They transition their personal experience of pain from their private lives into a virtual public space. By disclosing of their experiences with pain, they are able to legitimize their pain identity and carve out their voice.”
Other benefits of Internet-based forums for patients include the continuous presence of the web, allowing users to engage at their own convenience. Along with that, the anonymity of invented screen names encourages disclosure without risks of personal intimidation or stigmatization. And, whether or not anonymity is chosen by participants, the online community allows individuals to present themselves as chronic pain sufferers without being viewed merely as complainers.
COMMENTARY: While this was not a very rigorous study, with sophisticated analyses, it does seem that Becker has accurately summarized the dynamics of how patients most typically interact with each other online, and the benefits they might derive from this. At the least, that is consistent with our own observations of the few patient-centered online groups that we have examined.
A question implied by this study is: Should healthcare providers recommend or should they discourage participation in online chatrooms or similar forums by their patients with chronic pain?
It must be noted that the particular cyber-workshop Becker observed was moderated by 2 professional facilitators, who would jump-in if misinformation was shared or a participant seemed to be in need of urgent care. While participants often just wanted to be heard, without reminders that they probably should consult their healthcare provider, the facilitators played this vital role. However, the interjection of authoritarian advice sometimes stymied further participant responses in the particular discussion thread.
A special concern regarding most online patient groups — which are rarely moderated by trained facilitators — is that the exchanges can easily stray beyond validation and encouragement to the tendering of medical advice. For example, a patient might describe a problem they are having with certain medications and ask the group for advice. Others may respond with similar medication experiences and how they solved the problem. However, since each patient is different, with their own medical history and treatment plan unknown to the group, such advice could be inappropriate and it might even be harmful.
The most circumspect answer to the question above — about either recommending or discouraging chatroom participation — may be that healthcare providers need to recognize that many patients with chronic pain do participate in these online activities; often, at the recommendation of fellow patients. Practitioners might discuss this with patients and, without judgmentally discouraging participation, remind them that the Internet is flooded with medical misinformation. At the least, patients could be cautioned that what they learn from others online may not be at all pertinent to their own pain condition or its most appropriate treatment. What do readers think of this? Please comment below.
REFERENCE: Becker KL. Cyberhugs: Creating a Voice for Chronic Pain Sufferers Through Technology. Cyberpsychology, Behavior, and Social Networking. 2013, 6(2):123-126 [article here].
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