Using Personal Stories to Bring the Reality of CFIDS to the Public: Our Oft-unused Advocacy Tool

The Power of a Personal Story Conclusion– Part 4

By Craig Maupin at www.cfidsreport.com

Right now, the American public is not concerned about CFIDS. They see little reason for more research, community awareness, or national effort to be dedicated toward defeating CFIDS. To many, the words fatigue or chronic fatigue in the name Chronic Fatigue Syndrome are trivial symptoms that are effortlessly overcome by rest, nutrition, and exercise. But even though the public shows a lack of understanding about CFIDS, it is important to remember that the public is not entirely to blame.

The public has not seen the personal side of CFIDS that those who the illness has touched know so well. They have been told of CFIDS, but often have not been shown it. For much of the public, CFIDS does not have a personal face. When the public sees CFIDS with a personal face, and realize that face could indeed be their own, we will see the lives of those with CFIDS change dramatically.

Personal stories of people with CFIDS, however simple, have been under appreciated as an effective tool in turning the tide of public apathy. I have seen stories of the damage that CFIDS can cause speak very powerfully. Children who lose their childhood, young people whose futures are irrevocably altered, and men and women who lost their jobs and families are all part of the devastating fabric of CFIDS. I have seen stories of PWC's who were reduced to poverty, who lost promising careers, and who were prevented from finishing school, thus leaving their life direction permanently altered. These stories are rarely considered to be our most potent weapon in fighting for public recognition for CFIDS. But, they could, if effectively utilized, be our ace in the deck for our efforts to turn around public attitudes.

There can be no doubt that, above all else, a change in public attitudes toward CFIDS could be incredibly effective in changing the lives of PWCs. The public’s attitudes toward an illness are the leading precipitator of public action in addressing that illness.

. It is a change in public apathy toward CFIDS that should be our number one priority. And finding a way to get before the public, powerful, personal, stories of the loss and suffering that CFIDS can cause, along with effective and savvy media policy, is our most effective way to do this.

Using the Personal Story as an Advocacy Tool

So, what can you do to help? All efforts at getting personal stories to the public may not be equal. One of the necessary requirements to make personal stories effective is wise and savvy application. Here are a few suggestions.

1. Show this series of articles to your local support group. Share ideas together on what may be the most effective way to use personal stories in your community. These stories can to make those in your community develop an understanding of CFIDS as a devastating illness.

2. Contact your local paper. Do you have a child, or spouse, or friend disabled with CFIDS? Often the most effective and credible stories of CFIDS go untold simply because those who live them are too ill to get their story out. In these cases, it is concerned friends or family members that will have to be the facilitator or even spokesperson. Also, consider contacting local media outlets under the leadership of a local support group. This almost always recieves a better response.

3. Consider local television news - The local news is a great place to turn for coverage of a personal story of CFIDS. Contact them and tell them you have a story in mind.

4. Utilize and discuss strategy (see below). It is perfectly acceptable to talk strategy about how we can use personal stories in the most effective way. The AIDS community was extremely savvy about using strategy to be more effective in their use of media; often selectively choosing their stories to make emotional appeals to the public. More coverage was not their overall goal. They use personal stories to tug at heartstrings and combat critics, and they were highly successful. It is the quality and effective strategy, not the quantity of the stories we choose that will determine the effectiveness of our efforts. Credibility and emotional appeal greatly affect how stories can be used to combat critics. Each should all be placed under consideration before choosing to contact a local media rep with a story.

The aim of a personal story of someone with CFIDS should be to turn public apathy around. Keep this goal in mind. Some stories are more effective than others in accomplishing that goal. Here are some key components of effective stories that turned public attitudes around for other illnesses, such as the stories we read earlier about Ryan White and Jim Eisenreich. If your support group chooses to work with local media on a personal story of CFIDS, these are some important strategies and issues to think about beforehand.

1. Credibility - For an illness like CFIDS that is struggling for universal acceptance and is often seen as controversial, credibility is a very important attribute for those that represent the PWC’s before the public. Chose subject whom the public will be likely to see as credible.

2. Emotional appeal - Emotional appeal is something the AIDS community used very wisely to turn public apathy around. Often, they chose to focus on stories of children with AIDS. This had a great effect on their audience. A successful story often illustrates in a tangible manner the severe losses that illness can cause. The most effective stories in changing public attitudes often pull at the public’s heartstrings.

In the case of CFIDS, some of our most effective stories have gone untold because the most disabled in the CFIDS community are too physically impaired to get their own stories out. Could your support group help a PWC get his or her story out, by helping them with chores while if they perform an interview for a newspaper or local television station? Do you know a friend or child whose story would be great in helping the public understand the losses and challenges of CFIDS, but is simply too ill to do this? If so, maybe you could lend a hand. Some of our most effective stories will need a behind the scenes supporter or two to become reality.

3. Emphasize the distinctiveness of CFIDS - I was amazed at how well PWC Laura Hildebrand, while promoting her book on Sea Biscuit, presented the distinctiveness of CFIDS. Her vivid descriptions of the physical penalty she had to pay for activities that many would take for granted placed the distinctness of CFIDS before the public in a way that could easily be understood. The overpowering fatigue and exertion intolerance of CFIDS is unlike that of any other illness, and emphasizing this very distinctive and unique symptom can help the public understand what it is like to live with CFIDS.

4. Using stories to combat the critics - In the U.K. and now in the U.S., psychological special interests have often portrayed CFS as a illness that is widely susceptible to simple behavioral and attitude modification. Personal stories can be used to show a countering human perspective. Even more devastating, personal stories can subtly tie these special interests to many of the persecutions and misunderstandings that CFIDS patients face daily. This was a frequent tactic of AIDS advocates in the mid-80's. In the U.K. patients, sometimes young children deal with the specter of being removed from their parents and forced into treatment. Adults with M.E. also have been put through treatments that have resulted in making their illness relapse. These stories, if credible, should be told publicly and not hidden. They can be powerful tools in winning the war on CFIDS. If we decide we want to make headway against the behaviorists, then personal stories, used with discretion, can be an effective tool in creating public distaste for their enterprise.

If there is a way for a CFIDS advocate with little financial resources to help defeat CFIDS, it could be by securing a personal story about CFIDS in his/her local paper. Such coverage is worth thousands of dollars, and can permanantly educate and inform the public, medical community, friends of CFIDS. These stories can reap lasting dividends.

Stories of the loss that this illness engenders are going untold as we speak. Getting these stories out can generate public concern about CFIDS in a public that previously felt unaffected. Personal stories have been an effective advocacy tool for those with Tourette’s Syndrome, and they have been effective in turning around public apathy toward AIDS. They can be effective for those with CFIDS as well! Personal stories are powerful advocacy tools, whose use is free of charge. We have long left them unused and underappreciated. Simplicity is no barometer of power. We can educate, inform, and motivate the public to address CFIDS. The power to help us do that is in a well-told personal story!