How do you go about defining invisible disability? Is it a specific illness or condition, such as multiple sclerosis, fibromyalgia, bipolar disorder, diabetes, a Chiari malformation or syringomyelia? Is it the symptoms of an illness or disability, such as pain or fatigue or neuropathy or brain fog?
Why do we even use the phrase? Where did it come from? Isn’t a disability just a disability, no matter if you can see it or not? Are people treated differently because their disability manifests itself visibly? Is having a disability different from being disabled? These are all great questions to ask if you are defining invisible disability. Is someone who has an illness or is in pain, or has a disability or is disabled, a bad person who should be treated like a lesser human being? I can answer that one with a resounding, no!
A Journey Begins with a Mission of Defining Invisible Disability and a Long Term Goal of Building Awareness
Twenty years ago in 1996, my wife, Sherri, described herself as someone living with an “invisible disability.” It seemed like an apt description. At the time, we had never heard of the term before but we were embarking on a journey that would have at its core the mission of defining invisible disability and long-term goal of building awareness. After receiving a diagnosis of primary progressive multiple sclerosis and chronic late-stage Lyme disease in 1991, at the young age of 27, Sherri endured the stares and accusations and disbelief of strangers and friends that questioned how she could be disabled and still walk with seemingly unapparent outward signs of her disabilities. People would often scream at her when she parked in an accessible space or ignore her when she collapsed on the floor of a department store. So the phrase, “I have an invisible disability” became an apt description of what she was living with. More