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Case Study: Virtual Community as Empowerment - Chronic Fatigue and Immune Dysfunction Syndrome

by Sue Boettcher

November, 1999

"I came to the computer in despair. I read all the upbeat and encouraging quotes and I will leave the computer with hope and strength to continue." --Yvonne, guestbook post.

"For the first time in 13 years I feel vindicated. Today I told my husband that all the people who told him I was crazy and/or lazy will now have to 'eat their words' because I have found a community of people who are just like me." --Shyrell Melara, guestbook post.

Setting the Stage:

In January of 1991, Eva Shaderowfsky was a successful photographer with work in the permanent collections of museums all over the U.S. She had a show coming up and was working hard in the darkroom making prints for the exhibit. Shaderowfsky, one of those brilliant, talented people with a variety of skills, was also a published writer. Her short stories, essays and poetry reviews and critiques were published in books and magazines. Her sons were grown, she had an active social life, and at 52, she was in the prime of her career.

Then one day in January of that year, she got what she thought was the flu. It hasn't gone away since. After a few months of this she was diagnosed with CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome.

She has muscular-skeletal pain all the time, which isn't relieved by anything except narcotics. But she can't take those because she can't tolerate the extreme side effects. Her ears ring non-stop and she gets sweats and runs a low-grade fever. She has trouble concentrating and remembering. Sometimes she gets dizzy. And she experiences a continual bone-weary exhaustion that others find hard to comprehend.

Shaderowfsky wrote about the first months of her illlness:

"I didn't even have the strength to cut vegetables, much less go shopping. And our two-hour hikes, well, we hadn't been on a walk of any kind for six weeks. ... I was extremely exhausted and walking felt like wading through jello. ... [Jim] was doing all the cleaning, everything he usually did plus my share. He fed me, did the laundry, sat with me for hours holding my hand or stroking my hair as I lay on the couch, too exhausted to move."

Needless to say, darkroom work was out of the question.

After several years, she finally had the energy to take apart her darkroom and store the equipment in the attic. It's still there.

She is still able to write, though with great effort. Her short-term memory is lousy. She finds it difficult to concentrate and synthesize her thoughts in a creative way.

Her social life, once busy and active, is a ghost of what it was. Because she's too exhausted by evening, she can't usually leave the house then. Talking on the phone is exhausting - researchers have found that processing of auditory information is impaired in people with CFIDS.

Going out for lunch or even to the doctor is a fairly major expedition and scheduling more than one event like that in a day is out of the question. Having people visit for an hour or two is tiring on a good day, utterly exhausting on a bad one. Overdoing can lead to a long string of bad days - something known in CFIDS circles as "payback."

With all of this misery going on, one would think CFIDS would be recognized as a legitimate, serious illness. But it's not. It's often called Chronic Fatigue Syndrome, an innocuous-sounding misnomer, or even Yuppie Flu, in disdain. Sufferers are accused of being malingerers, or thought merely to be depressed. Friends, unable to understand what's happening, or hurt when the CFIDS victim says no to social engagements when they clearly *look* fine, desert them. Family members sometimes chide them and make completely unrealistic suggestions.

Shaderowfsky lost a friend of thirty years because the friend couldn't understand why she couldn't attend her birthday party. Shaderowfsky had been dressed and was ready to go, when she discovered she didn't have the strength to stand up from the couch.

Part of the problem is that CFIDS sufferers don't generally look sick and most usual lab tests are within normal limits. Recent research has found biochemical markers and abnormalities that finally point toward a physical cause to their sufferering, but many physicians aren't familiar with the new findings.

The end result is an invisible prison of isolation, invalidation, and depression resulting from a combination of a miserable illness and a real lack of support from society. In fact, suicide is one of the leading causes of death of CFIDS.

Empowerment via the Internet:

In May of 1991, after Shaderowfsky had been ill for a few months, her son gave her a modem and America Online software for her birthday. She thought maybe she could find a support group on AOL.

As it turned out, she was wrong - there wasn't one - but that didn't stop her. Over the next year or so Shaderowfsky and another person with CFIDS founded the first CFIDS support group on AOL. That group is still going strong 8 years later on AOL, with perhaps a dozen chats a week, although Shaderowfsky has since moved on to other things.

Virtual Communities can open those prison doors. VCs are a perfect place for illness support groups. People sometimes simply can't leave the house for face-to-face support group meetings, or choose not to spend their limited energy that way. Many times these same folks can manage to sit at their computers for even just a few minutes a day and get email support from pen pals, post at a message board or attend a chat.

They can compare notes with others who are ill, keep up on research, get names of doctors to try and just generally feel understood in a way that isn't possible without a support group.

Finding support for oneself is a key motivator for participation in virtual community among the CFIDS population. But along with that goes the desire to then share what they've found with others and give back to the community what they discovered was so hard to find when they first became ill.

Lisa Lorden has CFIDS too. She saw an opportunity to become the About.com (formerly MiningCompany) Guide for CFIDS. Lisa writes:

"For me, my work with the website is more a labor of love than anything. When I was first diagnosed with CFIDS, I didn't know what to do or where to turn for information and support. I've tried to create a place where other CFIDS and Fibromyalgia sufferers can find all the things I wished I'd had then. And the opportunity to help others in this way helps m brings meaning to my own struggle with illness. For many patients who are ill and debilitated, the Internet provides a lifeline to essential information and a connection to others with whom we can share our stories. I believe we can make a real difference to CFS sufferers, our loved ones, and all those who need to become aware of this devastating illness."

Mary Schweitzer, PhD, taught history at Villanova University before she became ill with CFIDS and had to stop working. She experienced an online friend's suicide from CFIDS and decided to do something to keep it from happening to others. She started her own email support list.

"Sasyfras was formed as a way to offer support, information, and activist discussion in a PRIVATE forum (the discussion list is not gated to USENET; the subscription list is private; and there are no archives). It is named after a person with CFS and fibromyalgia who took her own life -- 'Sasyfras' was her internet handle -- and one explicit purpose is to prevent suicides by actively intervening at the first sign. A special effort is made to always keep the list supportive; members are not even permitted to belittle or flame other list members backchannel.

"Sasyfras was founded by a group of women who had been kicked off a list run by men. We felt we wanted a support and information list for our disease that had a feminist flavor to it, in the sense of being supportive rather than combative, understanding of faults rather than critical. I think that has worked well, although most members would probably disapprove of the term 'feminist' being used to describe a list that is explicitly set up to take advantage of the best of women's culture."

"The list is also deliberately set up to accomodate the cognitive dysfunction that is a hallmark of CFS/ME [Myalgic Encephalomyelitis - another synonym for CFIDS, used mostly outside North America]; there is a separate, edited list that includes only the serious medical and research posts for those who can't tolerate 'topic drift' by the brainfogged."

The needs of chronically ill people go beyond emotional support. There's a very real maze of red tape, governmental regulations, and Social Security and disability support payments to navigate. Schweitzer saw a way to help there, too:

"Disinissues, another list for disability insurance issues, was formed because several of us who ran a website for disability felt ourselves inadequate to keep up with the constant questions -- the immense, unmet need for information on the subjects of private long-term disability insurance and social security disability. On this list, patients who have been through the disability application process help out those who are new to it. The information sharing not only helps the ones who are applying, but it also gives a sense of self-worth and confidence to the disabled who participate in helping others, when they are physically up to doing it."

Strong Needs to Connect:

After I'd gotten to know Shaderowfsky and read some of her writings about what it was like to have CFIDS, I realized that her writing, and that of other CFIDS sufferers, belonged somewhere on the internet. There, they could be read by both healthy people - as education - and other sick folks - for support. So I did just that - built a website. It was up for a couple of years and the guestbook was a busy, active place where people posted their experiences and expressed gratitude at realizing finally that they weren't alone.

It was the perfect place for a VC, but my VC experience told me it would be a lot of work to set up and maintain. I kept putting it off. Finally a post in the guestbook - I don't recall exactly which one - kicked me off the fence. This was a community *waiting to happen* and all these people needed was a place to gather.

I looked around and found some free message board software that would email me each post (to save me trips to monitor things) and automatically delete the old posts. It was simple to use - good for brainfogged folks - and it looked perfect to me. I signed up.

I set up the board and sent out announcements to a few dozen people I knew online with CFIDS, asking them to help me kick it off. I'd been expecting to have to do some further promotion to get it off the ground, but that wasn't necessary at all. As I'd felt was the case earlier, the community was *waiting* to happen, and all it needed in order to blossom was the board. It's required very little input from me, and it's gratifying to know I'm providing people with a place to connect.

The usual beginning Virtual Community often has trouble attracting enough members to reach "critical mass." But disabled folks in need of connection and support usually have a strong will and desire to connect, motivation that surmounts barriers that would leave many other communities in the dust.

Equal Partners:

When needs for community and support are met, disabled people can focus on more than their disability. Like people everywhere, they have a variety of interests, skills, and talents. Virtual community is a place for ill people to actively participate in life in a way that's impossible for them offline. This may mean helping out in support communities related to their illness. It may also mean reaching more broadly than that into other interest areas, to reclaim in some way the people they were before they became ill.

In September of 1991 Shaderowfsky started hosting a women's issues chat on AOL called "The Women's Room." In 1995 she helped found the first women's forum on AOL, and in 1997, she and I founded women2women, a women's community on the web.

Participation in life is something we healthy people take for granted, but for people whose entire lives have fallen apart around them, this participation on equal ground with healthy people is vitally important to their self-esteem and sense of self-worth. They often haven't a whole lot of options to fill their needs to be productive and feel worthwhile.

"Online, I'm not sick," Shaderowfsky says simply.

Online, she can reach beyond her illness and take her rightful place as a vital element of the community, providing a service to healthy and ill alike, participating in the world as a host, a guide, a mentor, a friend, a mother, and an equal partner.

Contact information:

Sue Boettcher
webmaster, Listening to CFIDS
co-host, women2women http://women2women.com

Eva Shaderowfsky
co-host, women2women and host, Evenings with Eva

Lisa Lorden
About.com Guide to Chronic Fatigue Syndrome

Mary Schweitzer, PhD, Villanova Univeristy
founder, SASYFRAS, and CFIDS activist

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