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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  

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

The public has not seen the personal side of chronic fatigue syndrome (CFS). They have been told of CFS, but often have not seen it. For much of the public, CFS does not have a personal face.  It can't happen to them.  When the public sees that chronic fatigue syndrome has a personal face, and realize that face could indeed be their own, we will see the lives of those with CFS change dramatically.

Personal stories of people with chronic fatigue syndrome (CFS), 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 CFS 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 CFS. 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 CFS. If effectively utilized, personal stories could be our ace in the deck for our efforts to turn around public attitudes toward CFS.

There can be no doubt that, above all else, a change in public attitudes toward chronic fatigue syndrome (CFS) could be incredibly effective.  At the root of low federal funding, poor treatment, and public apathy are apathetic public attitudes toward CFS. 

A change in public apathy toward CFS should be our number one priority. And finding a way to get powerful, personal, stories of the loss and suffering that CFS can cause is a 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.  In fact, some stories can reinforce public apathy.   One necessary requirement to make personal stories effective is discernment.   Here are a few suggestions on how to make personal stories an effective tool.

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.  Discuss how these stories can make those in your community develop an understanding of CFS as a devastating illness.

2. Contact your local paper. Do you have a child, or spouse, or friend disabled with CFS?   Often, the most effective and credible stories 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 the spokesperson. Also, consider contacting local media outlets under the leadership of a local support group. This group approach to local media contacts almost always receives a better response.

3. Consider local television news - The local news is a great place to turn for coverage of a personal story of CFS. 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 to 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 stronger. More coverage was not their overall goal. They used personal stories to tug at heartstrings and combat critics, and they were highly successful. It is the quality, not the quantity of the stories we choose that will determine the effectiveness of our efforts. Credibility and emotional appeal greatly affect the public response.

The aim of a personal story should be to turn public apathy around. Keep this goal in mind. Some stories are more effective than others in accomplishing that goal. Should we use a child?  Should we use a doctor or respected professional?   Here are some key components of effective stories:


1. Credibility - For an illness like chronic fatigue syndrome (CFS) that is struggling for universal acceptance and is often seen as controversial, credibility is very important. Chose subjects who the public is likely to view as credible.

2. Emotional appeal - Emotional appeal is something the AIDS community used very wisely to turn public apathy around. Often, the AIDS community chose to focus on stories of children with AIDS. These choices, though often made behind the scenes, 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.

3. Emphasize the distinctiveness of CFS - I was amazed at how well Laura Hildebrand, while promoting her book on Sea Biscuit, presented the distinctiveness of CFS. Her vivid descriptions of the physical penalty she had to pay for small activities, activities that many would take for granted, placed CFS before the public in a way that could easily be understood. The overpowering fatigue and exertion intolerance of CFS 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 CFS.  Emphasizing more symptoms is not necessarily effective.

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. Credible personal stories can be used to show a different, and human, perspective. Even more devastating, personal stories can subtly tie these special interests to many of the persecutions and misunderstandings that CFS patients face daily.  This is an offensive, rather than a defensive strategy that simply gives critics publicy.  And, it was a frequent tactic of AIDS advocates in the mid-80's.

Make a Difference

If there is a way for a chronic fatigue syndrome (CFS) advocate with little financial resources to help defeat their own illness, it could be by securing a personal story about CFS in his/her local paper. Such coverage is worth thousands of dollars, and can permanently educate and inform the public, medical community, friends of CFS. These stories can reap lasting dividends, creating a permanent public effect.

 Personal stories are powerful advocacy tools; and their 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 CFS. The power to help us do that is in a well-told personal story!