Using Care When Participating in Online Support Groups

Last year, I was diagnosed with trigeminal neuralgia (TN), a rare nerve disorder that causes severe facial pain. Like most people in today’s society, I went to the Internet to seek information and treatment options.

Somewhere along the way, a Facebook page for TN sufferers came to my attention and I joined. Soon, posts were appearing from others who suffer like I do. However, instead of finding words of wisdom I read posts from people who simply complained.

People wrote of a hard night of excruciating pain or an unsympathetic mate. Some posts provided guidance on how to obtain disability payments. One woman laid out plans to surrender custody of her children to her parents. 

As a wife, mother and working professional I became terrified.

I quickly changed the setting so the posts would not appear on my page. Then I finally decided not to have a Facebook page anymore. I found a neurologist who specializes in TN and got relief.

However, there are those with long-term and chronic conditions that find online support groups to be helpful.

Meg Lubas, MSW, is a social worker at Sentara Norfolk General Hospital and a doctoral candidate in health services at Old Dominion University. She conducted research related to online support groups and their effectiveness.

Her overall recommendation for an effective online health support group is to be sure a medical professional is monitoring it.

During her research, Lubas monitored an online grief support group that ran for eight weeks. She said it was helpful to those who participated, especially if they live a long distance from a facility, she says.

Belinda Risher, RN, an oncology nurse navigator with Sentara Health Systems, currently runs an online support group for breast cancer victims. Working moms are a major component of her group.

“Unfortunately, we are seeing younger women with breast cancer. Many are trying to work and raise children. It is hard for them to get to a face-to-face support group. It is easier to get on (the Internet) anytime and post a question or scroll down to see an answer to an old question that is similar to theirs. This is easier than to stick to a 7 p.m. weekly meeting time,” Risher says.

Questions range from medical to cosmetic such as how quickly hair grows back following treatment, she says.

Risher said it is understandable that there are patients who do not like the online group.

“With cancer, sometimes people die and that can be especially hard if you are new to the group. And we are going to have some who want to complain and that can bring people down,” Risher says.

She recommends that if you are turned off by a group early on, to try it few more times before leaving.

Since the posts come at different times of the day, Risher cannot always monitor in real time. 

“That can pose a potential danger. I have taken down a few posts that try to sell products. I take them down, but they may have been up there for a little while,” Risher says.

“The group is closed, so not everyone can get on. If I see something or someone that appears shady, such a man wanting to participate, I always ask if they have breast cancer or if a family member has it. I have done that several times and they never answer back,” she says.

Debbie Ward, of Nova Scotia, Canada, is a long way from Sentara Healthcare in Virginia Beach, Virginia, but she participates in the Sentara Burn Survivors online group through Skype. She says her group has a professional monitor.

Participants are in Virginia Beach, North Carolina and Western Virginia, she says.

Ward, who is in her late 50s, was burned as a child. Her goal is to help others who were recently burned.

“I understand what they are going through,” she says.

A good portion of the time is spent talking about skin graph option and other skin repair techniques. 

“We have one man who just got a bionic arm. He demonstrated it to us. That was encouraging to see,” says Ward.

About the author

Susan Smigielski Acker

Susan Smigielski Acker is a freelance journalist and editor. Previously, she was a newspaper reporter in Georgia, a feature writer on the U.S. Army Kwajalein Atoll, Marshall Islands, and worked at NASA Langley Research Center. She resides in Newport News, Virginia, with her husband and two daughters.