Cyberhugs: Easing the isolation of chronic pain

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Online forums offer much needed virtual support.

By Margaret Jaworski

When she received an invitation to participate in an online workshop for chronic pain sufferers, Karin Becker eagerly registered for the six-week program sponsored by a local health group. Becker, a Ph.D. candidate in communications at the University of North Dakota, quickly realized that it offered a unique opportunity to study the impact and value of online interaction among people with chronic pain, a topic that fit perfectly with Becker’s research interests.

My focus is on pain communication, and the social and professional stigmas of expressing chronic pain conditions,” Becker told Pain Resource. Her passion for the topic is rooted in her personal experience as someone with chronic pain. “My experience has shaped a lot of who I am and my identity, Becker said.

Although Becker chooses not to elaborate on her condition’s cause or manifestations, she readily shares the emotional impact chronic pain has had on her life. Along with the physical component, chronic pain is difficult because of its hidden and sometimes erratic nature.

It’s not always visible, and even though it’s chronic, the pain may vary from day to day,” Becker  said. “As a result, people can sometimes have a dismissive attitude about the pain or downplay the severity of the symptoms. And because the problem or the disease is chronic and ongoing, the novelty of the illness and the attendant sympathy and patience eventually wears off.”

Another issue: People don’t know how to respond to someone who tells them that they suffer from chronic pain. “Because there’s no easy treatment or solution to chronic pain, people don’t know what the ‘protocol’ is,” Becker said. And that’s just on the friendly, social plane. What happens in a professional setting when disclosing a chronic pain condition can intimidate, alienate or otherwise affect coworkers and management?

What happens can encourage, discourage or shut down further communication about chronic pain. As a result, chronic pain suffers are a marginalized group that is discouraged from voicing their pain. “They are, in effect, deprived of a voice,” Becker said.

And that leads to her study. Over the course of the workshop, Becker systematically analyzed the comments posted anonymously on the unmonitored website forum by the 18 workshop participants. Two clear themes emerged: validation and encouragement. The participants wanted to know that others could relate to their experiences.

“The users expressed that they were apprehensive about a diversity of health concerns, including passing their illness on to their kids; lack of physical ability and ability to get it back; getting seizures and not feeling normal; unpredictability of pain; anxiety about inability to lose weight; depression; sadness; anger; and frustration,” Becker said.

Authentic Communication
Becker’s study, Cyberhugs: Creating a Voice for Chronic Pain Sufferers Through Technology, published in Cyberpsychology, Behavior, and Social Networking (February 2013), confirms that online websites and virtual audiences facilitate disclosure and allow for authentic communication.

As a result, finding a place where chronic pain sufferers can discuss their experiences and marginalization is of very important. The space needs to provide a haven where this population can feel safe to disclose feelings and symptoms. This supportive space can help cultivate a voice, both in terms of working through the complexity of articulating phenomena that exist outside of language, as well as discussing experiences that exist outside of mainstream society.

Chatrooms devoted to chronic pain are one way to establish a sense of community among isolated people. Examining the discursive practices of chronic pain sufferers has led to the finding that technology plays a significant role in facilitating pain expression.

The validation and encouragement offered via a website empowers chronic pain participants. They move their private pain experience into a virtual public space. “By disclosing their experiences with pain, they are able to legitimize their pain identity and carve out their voice,” Becker said.

A Community of Voices
Pain is an everyday reality for this population. It is a constraint that sufferers must navigate and that affects them personally, socially, and professionally. Forum posters sought reassurance from their comrades in pain.One post often elicited several responses from workshop members.“The thread of responses created a community of voices, and once one person shared a difficult emotion it acted as a gate to signal it was safe for others to share their feelings,” Becker said. Through participants’ shared experiences, they were able to offer advice that was authentic, sincere, and credible. The responses showed empathy and the understanding that comes from an audience that can relate.”Validation
Responding to one user’s anxiety about the possibility of seizure, someone wrote, I can certainly see how that would make you feel angry and worried.Another wrote, “Stress from work and a new health concern. Sometimes it seems like it will never end. One thing after another, never getting a break. Tired, very tired.”The response, “You wrote that you are very tired. I’m not sure if that means tired physically, emotionally or mentally but I bet it’s all three. Take one problem at a time. First is your health concern. If you don’t take care of you, you won’t be able to take care of anything else.”

Encouragement
Once their condition had been legitimized, users wanted emotional support. Although the concerns and emotions varied, responses were unanimously supportive and uplifting, urging users to stay positive and to be good to themselves.

For instance, the three responses to a user who wanted to lose weight but was frustrated by his fatigue advised patience and hope. One wrote, “Believe in yourself and give yourself time.”

Another user disappointed with her lack of physical ability and the fear that she might never get her mobility back received the response, Small steps!!! Many small steps turn into a great distance. Keep at it!!!

    

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