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The Unseen Price of CFS

 

By Craig Maupin at http://www.cfidsreport.com

Without a doubt, the physical price of chronic fatigue syndrome (CFS) is devastating. However, the physical price of CFS is not what sets the illness apart.  Physical loss is just one side of the coin.   Unlike other illnesses, CFS carries an additional burden.   Because the illness is poorly understood, because the name sounds trivial, and because many who suffer from CFS appear to have no physical signs of disease, they often face the illness under a wave of public skepticism and misinformation.   

Unlike other diseases, chronic fatigue syndrome can be an illness where sufferers go without support from their communities, their governments, and their family. Family, career, friends, community and the medical system are key to enduring a chronic illness. For those with CFS, these typical supports are often skeptical, disinterested, and nonexistent.  As such, CFS cuts a deep swath, producing not only suffering and stealing life’s dreams, but also destroying family and friendships.

At the root of the problem is lack of information. Many health care providers receive information on the CFS that is often incomplete, inaccurate, or politically-charged. Other times, they receive no information about research findings related to CFS.   Research on low molecular weight cell Rnase L (and antiviral molecule), red blood cell abnormalities, low circulating blood volume, and genetic profiling has been able to elucidate a unique path physiology for subtypes of sufferers with chronic fatigue syndrome (CFS).   Yet, many clinicians are unaware of this research. 

Despite these advances, CFS has remained frozen in political limbo. Government agencies often propagate misleading information on CFS as a “fatiguing illness”, perpetuating public apathy.   The definition of CFS has been broadened a handful of times, brining less disabled subjects into CFS research and affecting public perception even more.   For years, psychiatrists have received government funding to question the “perceptions”, “attributions”, and “perpetuating behaviors” of the predominantly female CFS patient population.   Many who should be working to help those with CFS, instead work to diligently to portray CFS as an illness of simple deconditioning and “avoidance”, and they make every opportunity to advance their views among the public – with government committees, research definitions, and agencies as their key battlegrounds.  

What Role has the Name Played?

A growing number or researchers have begun to question the societal, gender, and sociological factors that are behind both professional and public attitudes toward chronic fatigue syndrome (CFS). According to Dr Leonard Jason, a CFS researcher from Chicago, bias, a stigmatizing name, and public misperceptions are keeping the illness from advancing.   Jason speaks candidly about CFS:  "This disease… is actually more debilitating than just about any other medical problem in the world. Nevertheless, most accounts of the illness have simply shortened its name to the flip and damaging misnomer "chronic fatigue”, as if CFS is a mild inconvenience."

The lives of those with chronic fatigue syndrome confirm Jason’s bleak assessment. It doesn’t take long to realize that those with CFS face a different burden. From Seabiscuit author Laura Hillenbrand, to a biologist disabled by CFS, to a wife unable to take care of her children, the stories begin to sound familiar:   “I lost my health; I lost my family; I entered poverty; I faced a new isolating and impoverished reality”.   The physical price is only the starting point for the price of CFS.    CFS robs so much more.  It isolates.

Dream Dasher

Dreams dashed. Hopes stolen. The battle with CFS is often fought alone.   One such example of a lonely struggle is Carol Anne Dumas.  Dumas, a person with CFS from Atlanta, struggles to survive in a 600 square foot apartment.   When she speaks of CFS, she speaks of more than physical challenges. 

“In my early 30s I had gone back to school, changed careers and had just begun my own business in graphic design, when I became ill in 1989. By 1992, I was completely disabled. Before this, I had been supplementing my income by catering; with energy, health and optimism, I worked very hard.

I expected my life would include marriage and children. But, the illness has taken away all of these dreams and most of the things in life one takes for granted, caused me to become dependent... It is so sad to realize I will be unable to have children and grandchildren. I cannot make plans, even a day in advance; there are no dinners with friends, no saving for a house, no traveling. The illnesses are oppressive, painful, boring and lonely and for many of us, have caused a frightening financial situation in the present and a dismal outlook for the future because tragically, there is no end in sight.”

When Family is Lost

Often an illness can solidify family ties, causing the family to rally around the sufferer.  However, because many family members are misinformed about chronic fatigue syndrome, family relationships of those with CFS are often lost.   Teresa, who was on her way to a doctorate fellowship before developing CFS after a virus, lost her family when she was struck with CFS.   Her family felt that if she didn’t have a blood test to confirm her health problems, she had disgraced them.  Like many CFS patients, Teresa understands their skepticism, while missing them:

“Other illnesses show on the face or body that you are ill, too many times I hear "OH you look so well" I want to say, you have no idea what it took to get here, but in reality we do look good. It is a disease of deception. My family of origin gave me up -I was given an either / or ultimatum. I miss my family. I miss life as I knew it. I have experienced spouse, family and friend loss. It is one day at a time and very sad. I think if I was not a doctor, my experience would be worse. I do not expect recovery; I expect to find a way to live with this and doctors who will understand.”

Falling Through the Safety Net

The safety net provided to sufferers of illnesses can often fail those with chronic fatigue syndrome (CFS).  Many insurers have decided it makes good business sense to question the validity of those who are diagnosed with the illness.  In 1993, less than 500 people in the U.S. was approved for disability with CFS, and illness of over 800,000 sufferers. By 2002, this figure had changed very little. 

Teresa continues, “Another thing is obtaining disability -- a nightmare. I dread any reviews. …the SSDI that I paid into the system....I have to fight for...”

Many people with CFS are falling through the cracks of the government safety net. John Herd, a well-known activist in the CFS community, remembers huddling down in a frozen, small apartment, lights and heat off, shivering under the covers. Once a successful businessman who ran a multi-million dollar company, Herd now has come full circle.    Today, he lives without access to needed health care.

Gerald Campbell lost his financial future to CFS. He watched, as the bills piled up. “I worked in a biopharmaceutical company. In financial terms, I have lost (I estimate) a minimum of $200,000 in earnings, and more probably over $1 million as I would have been promoted and/or taken higher-paying jobs. I have also had $150,000 in medical expenses and $250,000 in medical-related expenses.”

A recent study estimated the cost of chronic fatigue syndrome (CFS) in the United States at 9 billion dollars, most of which is born by those with the illness and their families.

Longing for Freedom

There is another cost of CFS. Many people with CFS describe a longing, a hunger to return to the activities they used to enjoy.   Beverly, a person with CFS who lives in Ontario Canada, says:

 “Immediately before I was disabled I spent pretty much seven days a week at the camp where my husband and I are employed.   Mostly, I was a cook in the kitchen, but also did office work, grounds work, and anything else that needed attention or that other staff needed help with. I am seldom at the camp, or the church, now. Physically, I just exhaust too readily, and the pain level keeps me from many of my former activities… many jobs and hobbies had to be shelved.”

Pamela relays a similar experience.  In her case, her career path was completely altered:    “I was a production supervisor at a small factory, a part time (on-call) CNA, and a part time nursing student (2nd year). [I have lost] my ability to work, continue to attend school, and many activities of leisure I enjoyed.

A Disease Designed Like a Prison

Most PWC’s are realistic about where chronic fatigue syndrome (CFS) stands, politically, publically, and sociologically.   They understand the public’s skepticism has multifaceted causes.   Sociological attitudes, gender attitudes, a stigmatizing name, the medical and clinical community's, a broad amorphous research definition all play a role in the struggles they face.   CFS is an often political and sociological battleground; one they realize they are losing.

Yet behind all of the controversy and politics is a human element; people with CFS feel deeply. They miss and long for the freedom to be, to become, and to live. An anonymous CFS sufferer says it best, “There were so many things I enjoyed doing before that I cannot do now.    Horseback riding, painting, writing, dancing, swimming -- too many to even think about at the moment.    I had a very hard time being stuck in the house… How does one change oneself into something they are not?   I miss my freedom --the freedom to be spontaneous and to just "get up and go!”    CFS robs.  CFS confines. 

Loss of family, friends, community and health—each loss is devastating.   Chronic fatigue syndrome has a life-altering power that few illnesses can create.    But if we listen to the voices of those who are affected by CFS, we will see people who struggle to move past CFS's cost and reach, everyday.   Struggle to live, to love, and to choose.   The price of CFS can be heard in these voices, voices that say chronic fatigue syndrome is truly a “disease like no other”.

 

The author would like to thank all of those who suffer from CFS who assisted in the writing of this article by sharing their thoughts and experiences with CFS.  

  Article released on May 05, 2008