Kotecki Vest was a broadcast journalist and political director. She stopped working after she was diagnosed with lupus.
“My immune system is so low that picking up my children at school is a danger,” she says. “So I keep my sanity with Facebook, Twitter, Instagram and wherever else we” — other lupus patients — “can all get together.”
Her online community includes a chronic-illness Facebook group, a lupus group and others. They bring her laughter, belonging, and information.
A PewResearch Internet Project reported that, as of November 2013, “One in four U.S. adults (24%) say they are living with a chronic condition. One in five (20%) are living with two or more conditions.”
Some of the most active chronic disease groups on the web are for conditions that afflict young women. According to a 2010 study done by Comscore, “Women are more engaged than men on the Internet, and they chart their own course.”
Dr. Joseph Kvedar, a dermatologist and founding director of the Center for Connected Health at Partners Healthcare System in Boston, sees a lot of potential in such groups.
“These wired, actively engaged patients can improve the management of their chronic diseases and lead to better health outcomes.” He continues, “Paying attention matters, people who are active enough to go and read about their condition on the Internet are people who pay more attention to their condition — and the more attention they pay to it the better they do.”
Top Online Support Groups
Julie Ryan suffers from Fibromyalgia, along with migraines and cluster headaches. She has been researching and writing about Fibromyalgia since she was diagnosed with it in 2010.
According to Ryan, online support groups are a way to learn about one’s own disease process, while supporting others.
“Understanding how these disorders affect those around us influences how we treat each other. More people are being diagnosed with fatigue related disorders. By understanding these disorders we learn to be more patient with others.”
A few large listings of support groups are available, with dozens of conditions represented:
Julie Ryan has catalogued the 10 most popular online support groups for women with fibromyalgia and other conditions. The top three are:
Patients Like Me, which boasts 40,000 members with Fibromyalgia.
Healing Well, which has online support groups for just about any diagnosis, including both Fibromyalgia and Chronic Fatigue Syndrome (CFS/ME).
Health Boards, which offers discussion forums for almost any health topic, including Fibromyalgia and Chronic Fatigue Syndrome.
Many support groups have also made their home either partly or entirely on Facebook. One obvious benefit of Facebook is the ease of communication and coordination via the platform, which many members use on at least a weekly basis. Among the many conditions represented are:
Asthma (Asthma Support and Resource Group, Food Allergy and Asthma Support Group of North Jersey)
Breast cancer (My Breast Cancer Support, Pink Ladies Breast Cancer Support Group, Support the Fight Against Breast Cancer)
COPD (Breathe Better, COPD Support Ireland)
Depression (Depression and Anxiety Support Group, Anxiety and Depression Support Group, Depression and Bipolar Support Alliance)
Diabetes (Diabetes Support, Diabetes Support Group)
Fibromyalgia (Fibromyalgia Support Group, Fibromyalgia Support Groups by Aimee)
Heart disease (Congestive Heart Failure Support Group, The Heart Attack Survivor Group, HeartLinks Heart Transplant Support Group)
High blood pressure (Greater Atlanta Pulmonary Hypertension Support Group, NW Pediatric Pulmonary Hypertension Support Group)
Multiple sclerosis (Multiple Sclerosis Support Group, Multiple Sclerosis Foundation)
Obesity (Obesity Support Group, ObesityHelp.com)
And yes, there’s even a support group for Facebook addiction. Its effectiveness is anyone’s guess!
Starting Your Own
If you have a rare disease with no online community, you might want to start your own. This is a chance to make a difference in the lives of other people. But be warned: this responsibility should not be taken lightly. It takes work and a real time commitment to create and run a group. Some websites offer helpful guidance:
American Self-Help Group Clearinghouse – http://www.mentalhelp.net (search “self-help group sourcebook”)
Mayo Clinic- http://www.mayoclinic.com (search “support groups”)
WebMD – http://www.webmd.com
If you have a common health issue, it might not make sense to start a new support group. There are over 12,000 “chronic pain” support groups in Yahoo’s “Health and Wellness” section. Instead, search for a group that matches your needs; you can sort groups by size or by years in existence.
Whether you join a group or start your own, remember: your support needs are what brought you here. Treat your fellow group members with the same kindness and respect that you expect for yourself.