A CRUEL MYSTERY
“I will tell you not what you want to hear, but what I know to be true because I have lived it. This truth will trouble you, but in the end, you cannot be free without it, because you know it already, your body knows it already.” Arthur Franks, The Wounded Storyteller.
In this place I will shine a light on invisible, chronic illnesses. I am a witness to an invisible disease. A witness must assume the responsibility to tell the truth.
It is said that a good story demands to be told. So, through these blogs as well as my books and poetry I will be telling a story, as a witness to a truth that does not make the walking well comfortable but may create a deeper understanding of those who walk with invisible suffering.
First, I will tell you about Systemic Lupus. Because I am intimately bound to this wild wolf disease.
On one site dedicated to identifying lupus it is referred to as one of the cruelest, most mysterious diseases on earth.
Lupus strikes without warning, has unpredictable, sometimes fatal effects, lasts a lifetime, and has no known cause and no known cure.
There’s more to lupus than meets the eye. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is hidden from view because people often times may not look sick. It is more pervasive than people think and strikes on a scale that the public does not realize.
On average it takes 6 to 7 years to be diagnosed with lupus. Six to seven years of suffering. During which time the undiagnosed person will be told they are fine, they have nothing wrong with them, they are “just depressed” or even worse, asked “why do you want to be ill?”
There are over 5 million people diagnosed with lupus and probably almost that many undiagnosed. Yet it is considered a rare disease.
I chose to write the first blog on invisible illnesses to focus on lupus because it is the one that I live with.
I wrote, Shatter My Heart, to bring an audience an understanding and awareness of invisible illnesses and the ravages of being dismissed and undiagnosed not only on the patient, but on their loved ones as well.
As I share more about this disabling disease, I will also highlight many of the other invisible illnesses. While the underlying causes and etiology may differ, in many ways we share more of the struggles than the ones that differentiate the diseases.
I invite anyone with lupus or an invisible illness to offer their story as a responsible witness to their truth.
The cruel mystery lingers in our tissues, disrupts our days and nights and haunts every activity we undertake.