Wilhelmina D. Jenkins was a scientist, a physicist, who worked with microscopic particles on a daily basis, studying every minute detail of their structure and function. Yet when an unknown entity attacked her body, she was at a complete loss.

Pat Henderson shares her experience dealing with chronic fatigue and immune dysfunction syndrome.

“I usually describe it as sliding down the rabbit hole with no idea of when I would hit bottom,” Jenkins shared.

Now at age 56, Jenkins, is literally a “poster child” for the disease she had not even heard of when she first became ill in 1983. The Atlanta, Ga. resident is part of a photo exhibit that is traveling the country to raise awareness of chronic fatigue and immune dysfunction syndrome, also known as chronic fatigue syndrome and myalgic encephalomyelitis.

The exhibit came to Sacramento’s Sunrise Mall recently as part the first national public awareness campaign launched by the Centers for Disease Control and Prevention and the Chronic Fatigue and Immune Dysfunction Syndrome Association of America. The exhibit was also on display in San Francisco.

Jenkins’ likeness also appears on brochures and other educational material created by the CFIDS Association of America.

“I feel that it is particularly important to have diversity in age, gender and ethnicity shown in the exhibit, so I push my basic shyness aside, and let my ‘big head’ speak for me,” Jenkins explained.

Her participation is important, says Marcia Harmon, the Association’s director of communications.

“Contrary to popular belief, Blacks and Hispanics are at greater risk for developing CFS than Whites,” Harmon shared. “Unfortunately, there’s not enough awareness of this risk among Blacks and health care professionals, so the illness is frequently underdiagnosed."

According to Centers for Disease Control and Prevention's research, less than 20 percent of Americans with chronic fatigue syndrome have been diagnosed, Harmon continued.

A local woman, Pat Henderson recently attended a seminar titled “Know More: Chronic Fatigue Syndrome” hosted by the association at KVIE. Only three African Americans attended.

According to the CFIDS Association of America, chronic fatigue and immune dysfunction syndrome is “a complex and debilitating chronic illness that affects the brain and multiple body systems.”

Both Jenkins and Henderson share their stories as a way to show others that they are not alone in the disease that many, doctors included, still do not understand.

“I slid into total exhaustion, unlike any exhaustion I had ever experienced, worse than all-nighters in grad school, worse than caring for my children when they were born, simply indescribable,” Jenkins shared. “I developed horrible muscle pains, particularly in my legs. I have had both regular headaches and migraines most of my life, but suddenly I had a different level of migraine that dragged on and on.

“I had enjoyed taking aerobic classes, but when I started a new session that winter, I found myself collapsed against a wall, gasping for air in minutes. I couldn’t get to sleep for hours at night. I began to gain weight rapidly, without changing my diet at all. Ultimately I more than doubled my pre-CFS weight.

“Worst of all for me were the cognitive problems. I could not think. This was something that I never considered possible; the thing that supposedly no one could take away from you. At the time I was working as a physicist at the National Bureau of Standards, now the National Institute of Standards and Technology, and all of a sudden, I could no longer read my own work or understand my own equations. In daily life, I forgot the names of common objects and sometimes the names of my own children.”

She would get lost going to destinations she would have normally found in her sleep.

“Driving to work, I would somehow take a strange turn, get completely lost, and end up sitting in a grocery store parking lot, crying until I fell asleep. Suffice it to say, this was a nightmare,” she continued.

Her “nightmare” did not get a name until 1988.

“My doctors for those long, frightening five years were concerned, knew I was ill, and tested me thoroughly, but could not figure out why I was so sick.”

After successfully treating her for depression, a psychiatrist looked at her “huge array” of remaining symptoms and asked her is she had ever heard of chronic fatigue syndrome.

She said she had not and was referred to an infectious disease specialist, because back then it was thought that chronic fatigue syndrom was viral.

Henderson says not much has changed since those days.

“The issue here is that doctors don’t recognize it and help us,” she said. “The bigger issue is that they are not being trained in medical school to address this particular issue.”

There is no cure or overall treatment for chronic fatigue and immune dysfunction syndrome and doctors treat patients’ individual symptoms. Henderson, who was diagnosed in 1986, takes at least 35 pills and supplements for her different chronic fatigue and immune dysfunction syndrome-related symptoms. She also gets a regular B12 shot to improve her stamina.

“It really keeps me on my feet, otherwise I’d be out flat,” she shared.

As they have both suffered for 20 years or more, Jenkins and Henderson say support is key. Henderson says finding support groups early on saved her.

“Having had that interaction was a major help, meeting others who were experiencing the same suffering made all the difference in the world,” she shared.

For Jenkins, her family remains her rock.

“My husband is a wonderful man who never complains about all of my limitations. He has to do all of the cooking because I become completely confused; household tasks because I become exhausted very quickly; finances, as writing a check can put me to bed for the day; and a thousand other tasks. The one thing I can do most of the time is grocery shopping, but he has to unload the car and put the groceries away. My children and their families are consistently understanding and supportive. Friends are different; I have very little contact with friends I had before I became ill.

Jenkins said common misconceptions about the disease include that it is simply "being tired,” that it was a disease of the 1990s and no one has it anymore, that Black people do not get it, that it only lasts for a year or two; that it is a psychiatric illness or just a form of depression and that sufferers should just force themselves to get out, exercise, and be around people, and they will be fine.

“CFS is still a misunderstood illness, and it's very difficult to find health care professionals who know how to diagnose and treat it,” Harmon said. “Even though research shows CFS is not a form of depression or hypochondria, many Americans still believe the illness isn't real and treat sufferers with disdain.

Henderson agrees. She says her bosses were unsympathetic to her illness and created an environment that led to a total system breakdown. She left her job as an analyst with the State of California in 1987 and never returned to work.

“The new public awareness campaign is designed to educate both the public and health care professionals about the illness so sufferers can get diagnosed and treated appropriately,” Harmon continued.

For more on chronic fatigue and immune dysfunction syndrome, call (704) 365-2343 or visit www.cfids.org.