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Changing the Hearts of Middle America toward AIDS

The Power of a Personal Story – Part 3


By Craig Maupin at Ryan White

Today, confronting AIDS is priority number one on the medical agenda of our nation, our government, the public, and the media.   Funding for AIDS-related research and programs has climbed to billions of dollars per year.  Churches, social agencies, and communities have made tackling AIDS a main priority. Everyone from church-going grandmothers to star-studded movie stars now wears ribbons to show their solidarity with those who suffer from AIDS. AIDS is now top priority.

By contrast, chronic fatigue syndrome (CFS) is at the opposite end of the spectrum. Patients are routinely denied health benefits. Local organizations often appear unaware or unconcerned about the plight of those in their communities with CFS. The government funds trivial amounts of research into CFS, and what research they do fund may add to the stigma and problems PWC’s face every day. People who have lost everything to this devastating disease are considered deconditioned malingerers or deadbeats. The public at large cannot understand how any illness could make the simple tasks in life so challenging and are generally unconcerned.  In contrast to AIDS, CFS is not on America’s agenda. 

When AIDS was controversial

It would be easy to say that AIDS advocacy efforts have always had been easy; however, nothing would be further from the truth.  In the mid-80’s, AIDS advocacy faced two daunting obstacles.  First, patients with AIDS often were the subject of controversy, discrimination, and misinformation.  And second, one of the largest problems faced by AIDS advocacy was a similar problem to a problem presently faced by CFS advocacy; the public, felt that AIDS would never affect them personally. For the public, it was a disease of the “other guys”.   Into this period of public apathy about AIDS entered a boy from Indiana who eventually helped make AIDS the number one health care priority in America.   His name was Ryan White.

Most of us remember the courageous, yet heartrending story of Ryan White. Since his birth, Ryan had struggled with hemophilia, a disease that requires many injection or IV’s of a blood product called Factor VIII to assist his blood in clotting.   It was through these transfusions that Ryan White eventually contracted AIDS.   In 1984, after a long battle with pneumonia, his mother told him he had contracted the deadly HIV virus. It was then that Ryan began to experience problems that were not just due to the physical challenges of his illness, but due to a public harshly critical and misinformed about those with AIDS.   Ryan was intimidated and made to feel unwelcome, both in his school and in the community in which he was raised, Kokomo, Indiana. Eventually, he would have to move to the more receptive community of Cicero, Indiana.

In the mid-80’s, Ryan’s story became headlines around the world. His rejection by his community of Kokomo, Indiana tugged at America’s heartstrings. It was not a pretty story.   Often stories that move the public to action are disconcerting.   But it was exactly was needed at that time. The AIDS movement was struggling with public apathy. They had to make Americans feel that AIDS was a disease that could affect them and their children, not just someone else’s children.   Instead of an ambiguous article or benign reference to the illness, the specter of AIDS, through Ryan White, became a real person. With that transformation, the efforts that America applied to defeating and addressing AIDS began to grow.

Realizing the Personal Story had Power

If there was one thing that the AIDS community paid a lot of attention to in their early struggle, it was a wise and savvy use of the media. Their leadership realized that unless the public at large was concerned about AIDS, the government, scientific community, and society would likewise remain indifferent. They knew that if the battle against AIDS was to be won, it would be won in the media and in the hearts of the public.

The AIDS leadership often chose their stories wisely, concerned more with moving hearts than a continual public battle with their critics. Their astute choice of subjects often pulled at America’s heartstrings. They chose to downplay that which was controversial and emphasized that which would unify the public behind their goal of defeating AIDS.   In the end, they were highly successful. Today, AIDS is at the top of our nations agenda.

Claiming credibility from controversy

There are many similarities between Ryan White’s story and the stories of those with chronic fatigue syndrome (CFS) today. Those who suffer with CFS face schools, communities, and media who are often uninformed about how disabling and costly CFS can be. For many children with this illness, attending class or even finishing school is impossible, and many in their communities cannot understand and are unaccommodating.   Like AIDS before Ryan White, it is not a good time to have CFS.

As with AIDS in the mid-80’s, most Americans truly don’t see chronic fatigue syndrome (CFS) as an illness that can affect them. If they get it, they will just rest, take a multi-vitamin, and be on their way, or they will battle through the illness to achieve their goals. It is not an illness that many parents worry about for their children or themselves. Like AIDS in the early 80’s, it is a disease of the “other guys”. Fatigue, even “chronic fatigue”, is easily surmountable, right?

But as everyone who has an family member with CFS knows, it is so much more.   CFS is disabling, and its features are distinct.   Suffering from CFS can often be brutal.   Like AIDS in the 80's, CFS is often fueled by the views of experts the portray it as behavioral.   The AIDS community found that very specific stories like Ryan White's could tie thier critics, however subtly, to that which the public finds unsavory. This has application in changing public policy toward CFS.   Ryan's story is  proof that a personal story doesn't have to be that of a celebrity to capture the hearts and minds of those who read or see it

Every time we think that the public will always remain misinformed and apathetic toward chronic fatigue syndrome (CFS), it is important to remember that the public is capable of changing their feelings about any given topic. There are many stories of children with CFS who, like Ryan White, face local communities and a larger society apathetic about their disease. They often miss classes, school activities, and the ability to live a normal childhood.   Their stories can help turn the public’s indifference to CFS into understanding and action.   If there are any doubts about that, we just need to remember Ryan White!

Next: Putting it all Together. How to use Personal Stories in the War Against CFIDS