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Stories for Reprint
Faceless Foe: "Invisible" Disability Can Have Distinct Presence
By Ekaterina Pesheva
Say the word "disability," and most of us will think of people in wheelchairs or strapped with oxygen tanks. But disability comes in many shapes and forms, and it has many faces--some of them invisible. Just ask Arletha Manlove of Kansas City, Mo., who's lived with systemic lupus erythematosus (SLE) and fibromyalgia for more than 14 years. While quite different in origin and severity, both conditions are marked by profound and debilitating fatigue, among a host of other symptoms. In fact, Manlove can be so overcome by exhaustion at times that even taking a shower requires tremendous willpower and formidable physical effort.
"Even when people know what lupus is and understand lupus, they still don't get it completely," Manlove says. "I don't carry an oxygen tank, so people are really surprised when I tell them that I have lupus. And they really don't get it, especially when you appear to be a highly functioning person."
Part of the reason why lupus and other autoimmune disorders remain largely unknown among the general public is that they are relatively rare in and of themselves. For example, 1.4 million people in the United States have lupus. However, the combined prevalence of arthritis-related and autoimmune conditions is 70 million people.
In a world where disability is narrowly defined by observable physical incapacitation, those whose disability is less obvious - but often just as debilitating - may suffer lack of understanding.
The Americans with Disabilities Act defines disability as "any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine."
Fatigue, it could be argued, affects most of the body's systems. It is important to recognize that fatigue caused by lupus and other similar conditions is not the normal fatigue that most of us experience sometimes.
"Sometimes, I'd say 'I am exhausted,' and someone would say 'Oh, I am tired too.' And I think 'I wish I was your tired,'" Manlove says.
Profound fatigue was the first indication that something was not quite right in Manlove's body.
"My first symptom was extreme fatigue," she says. "I was so exhausted that I had to go the hospital. At one point I couldn't get out of bed, and I had been a pretty energetic young person."
An initial battery of tests showed nothing abnormal.
In 1986, after the birth of her first child, Manlove's health worsened. She developed soreness and inflammation in her joints in addition to the already debilitating exhaustion. She started having headaches and developing unexplained low-grade fever during the day. During the night, her body temperature would soar so high that her husband would wake her up to see whether she was all right. She had three miscarriages.
"I started thinking I was going to lose my mind," Manlove says. "I would struggle to do the most basic things, and lay on the couch all day. It started interfering with my marriage. My self-esteem eroded. I went through a series of self-help books, and I tried to push myself but that made me even more exhausted."
Manlove saw doctor after doctor, most of whom decided it was "all in her head." She was diagnosed repeatedly as depressive. Manlove was depressed, but depression was a byproduct of her underlying condition, lupus, not the cause of her problems.
Differentiating between primary depression and depression that results from dealing with another condition is not easy even for experienced clinicians.
"While I am not able to cite research findings regarding incidence or prevalence rates for misdiagnosis of depression for persons with 'invisible disabilities,' I believe that there is a potential for misdiagnosing depression if a healthcare professional is not sensitive to the cultural and socio-economic influences on an individual's well-being and psychological experience," says John Mahalik, Ph. D., a post-doctoral fellow in the Department of Health Psychology at the University of Missouri-Columbia.
Depression can be a constant or temporary companion of people who have chronic conditions, but in those who have "invisible" disabilities, it can be compounded by lack of understanding and support, Mahalik says.
"In conjunction with feeling marginalized by a lack of social and/or physical support, individuals with disabilities may be distrustful of the healthcare system due to the negative impact of social stigmas regarding disabilities, that is, instead of attributing responsibility for disability to the community or society at large, professional and nonprofessionals alike need to be aware of the emotional costs of attributing disability solely to an individual and his/her inherent disability," he explains.
After her lupus diagnosis in 1991, Manlove's rheumatologist told her to quit work. She did and applied for disability, which she was denied. Since then she has worked both part-time and full-time, looking for jobs that allowed her flexible hours. Manlove currently runs a lupus support group in the Greater Kansas City area and has recently taken up a full-time job to help finance her older daughter's college education.
Manlove says she has come a long way since the early days of her diagnosis when she was both scared and confused. Yet, she is constantly reminded of her conditions by the inevitable, and not always predictable, bouts of exhaustion. Even though Manlove's lupus is in control and she is taking steroids, her fatigue remains unbearable to this day.
"The fatigue and the exhaustion are the most debilitating, and the fact that nobody can puts this on a scale and recognize it is really, really terrible," Manlove says.
SLE is the most common type of lupus and it can affect many different parts of the body, including the skin, the joints, as well as the lungs, heart and kidneys in more severe cases.
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