“The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.”1 (emphasis added)
Back in 1989, Bea Arthur gave a voice to millions of the invisibly disabled. On an episode of the popular NBC television program The Golden Girls, Ms. Arthur’s character Dorothy encountered her former doctor in a restaurant. She boldly took the opportunity to confront him about the dismissive way he treated her when she came to him with undiagnosed Chronic Fatigue Syndrome.
If you haven’t seen this yet, or even if you have, take a moment now to watch.
Have done this in your dreams? Have you imagined having an audience for just 3 minutes with the physician or physician’s assistant who mistreated you? Have you rehearsed the words you would say to personalize the mental anguish you suffered when he/she dismissed you or worse, suggested you needed psychiatric care?
Chronic Pain and Chronic Ignorance
This episode of the Golden Girls was broadcast in 1989, nearly thirty years ago. Modern life bears little resemblance to what was familiar then, due in large part to advancements in technology (and hairstyles.) How is it then that we sit here in the year 2016 and relate in a deeply personal way to this woman who, three decades ago, was dismissed by a physician because she suffered an invisible disability? While much has improved – indeed I could (and will) devote a lengthy series of posts to the improvements – the fact that the experience portrayed in this clip is still par for the course is a clear sign that we have not yet arrived.
The Real Value of Awareness
I’ve had people ask me, in earnest, what we hope to achieve by raising awareness of little known chronic facial pain conditions. To some, it seems that awareness is an intangible goal, with little real value in the pursuit of better treatments or a cure to a disease. The unspoken question being: “If you raise all of this ‘awareness,’ what does it profit you, really?” This clip illustrates very clearly one of the goals of awareness. The only way to change the dismissive culture that still plagues “invisible disability” – the only way to change the doctor/patient experience – is to raise awareness.
1. Invisible Disabilities Association https://invisibledisabilities.org/↩