On the HomeFront
The book helps people know what to say, and sometimes more importantly, what not to say. Phrases such as “but you don’t look like anything is wrong” tend to minimize the seriousness of a person’s condition. It’s also better not to ask someone with a painful chronic condition “How do you feel?” The question puts the person in the uncomfortable position of either having to lie and say they feel fine or to respond truthfully, which can stop the conversation in its tracks. Better to ask “How are you doing?”
Also, commiseration can be fraught with insensitivity. For example, when a person with chronic fatigue syndrome says they’re so exhausted they can hardly make it, it is insensitive to respond “I’m tired, too,” followed by a laundry list of activities that led to the exhaustion. It really is two different states of being.
IDA includes an active social network of 4,000 people (www.invisibledisabilitiescommunity.org), and about 20,000 people a month visit the organization’s website (www.invisibledisabilities.org). The category of invisible disabilities is intentionally broad and includes thousands of conditions such as autism, fibromyalgia, chronic fatigue, multiple sclerosis, diabetes, chronic pain and chemical sensitivities. Basically anyone who suffers from a chronic condition who doesn’t exhibit outward signs of illness shares common experiences and social challenges. “These people will be invisible no more,” says the association’s mission statement. Videos of real people who suffer from various conditions are featured on the YouTube channel invisiblenomore.tv. Connell also writes a well-read blog at www.disability.gov.