ParentCare » Vol. 2

The Virtual Village

The Power of an Online Support Group
By Christina P. O’Neill

Millions of people all over the country now know each other without ever having seen each others’ faces or heard each others’ voices. For seniors or those taking care of them, the computer can provide a powerful link to others with common interests, questions, and information.. In the case of health concerns, the knowledge shared by online friends is a bastion of support for people who otherwise would be isolated.

Moderated online support groups for people with chronic illnesses serve an incredible need. For many years, I was a member of an online support group for people suffering from or taking care of someone affected with respiratory illness. I subscribed because of my mother. Due to confidentiality concerns, I won’t name the group, but I strongly suggest that anyone facing the challenge of a chronic illness should find a good group ~ and join it. It makes all the difference.
Every day, I’d get home from work and open my e-mail to find a dozen or more messages from the group. I got to know the posters; a handful of them, either managing their illnesses on their own or taking care of an ill person, posted regularly with solid information and stories of how they were doing.

The list would also be full of messages with subject lines seeking help ~ sometimes urgent. One particularly dramatic message “string” concerned a person who reported experiencing symptoms that prompted others in the virtual village to urge the person to go to an emergency room, pronto.

That person did so, and reported back to the group from the hospital (with the help of a family member). I couldn’t help but wonder what would have happened to this person if he/she had not had invisible people all over the country looking out for him/her.
The group’s most vital function was to share advice about medications. People would correspond about the utility of buying medications from abroad, whether from Canada or India. They would weigh in on what worked for them and what didn’t; they’d ask for help to learn how to use nebulizers or oxygen machines, or they would ask how to make their surroundings safe.

Hurricane Katrina and its aftermath put group members on the Gulf Coast at risk. When the power goes out, oxygen machines don’t work, and if you have a respiratory illness, you’d better be stocked up on tanks. One Louisiana-based group member, who had been a caregiver for an ill person since deceased, continued to post to the group, giving running reports of the rebuilding efforts, or lack thereof, where the ex-caregiver lived.

A well-moderated support group ~ and this one was one of those ~ had its bringers-together and its argumentative ones. The moderator kept a neutral tone, and when the conversation string strayed from the group’s core mission of providing advice and support for people affected by respiratory illness, the moderator would weigh in, gently but firmly asking the “offenders” to cut it out.

As can be expected in a support group for people with chronic illness, some core members died during the five years I was involved. Most of the time, we expected it ~ and when the message with that person’s name came, sent by someone else, we knew before we opened it what the news would be. When it happened, I felt a personal loss. Others did too ~ the one-line messages mourning the loss of a member seemed like a cry from the heart.

Online support groups run the gamut. Good ones, like the one I subscribed to, are well-moderated and stick to their mission. They don’t allow ads and they don’t allow violations of privacy. They monitor for both spam and bullies. I strongly suggest to anyone seeking help that the best place to start is online.

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