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Illnesses, Disabilities Can Be Invisible

By Maureen Pratt

There are many lessons about personal responsibility, the exercise of free will and respect for others that can be gleaned from the news report of the man with drug-resistant tuberculosis who traveled to Europe and back to the United States, doing so allegedly against the recommendations of doctors and the Centers for Disease Control and Prevention.


One primary lesson that often goes unnoticed is this: Many illnesses, chronic conditions and disabilities can be invisible, and misjudging others can bring personal and public pain.


When a U.S. border official saw the alert on his computer about the TB patient’s dangerous and contagious health condition, he waved him through the border anyway because reportedly “he didn’t look sick.” This further delayed effective handling of the patient and potentially exposed many more people to the disease he was carrying. I’ve been challenged several times about parking in a space designated for handicapped people because I “don’t look disabled.” Once a store clerk refused to help me with a heavy package because he didn’t think I deserved my handicapped designation. Another time a man hit my car with his fist while I was still in it because I “didn’t look like” I should be holding him up as I waited for a space marked for those with disabilities.


There are other judgments that can be equally distressing. I’ve heard older people tell younger people, “You’re too young to be sick,” thus disregarding their pain. And I’ve even heard patients lament that their physicians aren’t taking their complaints of fatigue and discomfort seriously because those patients don’t look like they’re falling apart.


There are strong support systems for people suffering from invisible illnesses and disabilities. Rest Ministries (www.restministries.org), for example, is a Christian-based organization that provides information and an online forum for these patients. It also sponsors “Invisible Illness Awareness Week” in September.

Organizations that focus on a particular disease often offer support groups for people who suffer from the disease in question. Some even provide links to more professional advocates, such as lawyers and government watchdog agencies. Also vital to anyone suffering from an illness – especially one that cannot be seen – is the support of family and friends. Offering help, praying and just listening are all ways that a loved one can be caring and understanding of someone’s pain.


When I speak to groups of patients, many of whom don’t look sick at all, I’m often asked, “What do you say when someone says, ‘But you don’t look sick’?” I explain that, although it is natural to want to become irritated, we patients need to use the opportunity to educate others.


When a man at the store refused to help me, I patiently asked for the manager and then explained that there are many people who have heart disease, diabetes, hearing and sight impairments, and other invisible illnesses that count as disabilities.


When the man hit my car with his fist, I waited for the parking space and honked my horn to attract the attention of others as a precaution.


One patient dealt with the doubt of others through humor. “Thank you for telling me I don’t look sick,” she said. “I guess all those meds are working!”


There will always be people who won’t believe someone is ill unless they look like they’re on death’s doorstep. But we patients must help those who would judge otherwise to know that seeing is not necessarily the whole health picture, and lack of acceptance and understanding can cause emotional pain and possibly public health problems too.

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