I have an exotic malady, Behcet’s Disease. Behcet’s is an autoimmune disease whose main symptoms are mouth and genital lesions, chronic uveitis that can lead to blindness and other conditions. It has caused in me arthritis, maybe fibromyalgia, epididymitis and microscopic colitis. Clearly, there is no justice. The constant inflammation in my eyes led to the permanent loss of half the vision of my left eye, thus the title of my blog. And just for grins, Behcet’s has spawned a cataract in my half-blind eye. I’m beginning to feel a bit like Oedipus in slow motion. But the worst part, aside from the constant, varied assaults, is the pain; the harrowing, intractable pain.
This disease bedevils patients with chronic inflammation of blood vessels and arteries. One of the charming little results in cardiac research of late is the confirmation that inflammation is a likely cause of heart disease and heart attacks. You might be ahead of me at this point: yes, it can cause strokes in the brain as well. It’s a like living with tiny little sleeper cells of terrorists, who, from time to time get their nasty little orders from afar, and attack some part of me with a miniature suicide bomber.
The problem with all exotic diseases is that few health care professionals know about it, outside rheumatologists who are most likely to be asked by an unsuspecting patient to treat his or her pain symptoms. Behcet’s common in Japan and countries along the old Silk Road. But here in the U.S. it only affects 1 in 500,000 and many people who are afflicted don’t know it because in most people the symptoms come and go. In our country, both men and women get it, but the symptoms seem to be worse in men.
Lucky for me, I was referred to a rheumatologist who while considering a diagnosis told me that I might have the disease, but said I was missing one to the two pathognomonic symptoms, yes she said pathognomonic to me but stopped dead when she saw the slack-jawed look on my face. “It means the main symptom, the cardinal symptom that confirms it can be no other disease,” she said, patting me on the shoulder.
“What’s the other symptom?”
“That would be large painful lesions on your genitals.”
“Thank you very much,” I said nodding to her, “but we’ll just keep my junk out of this, shall we?”
I was being thick headed. I was in denial. For years, along with the constant sores in my mouth, I had what I thought were nothing more than large, often dime sized, nasty zits that appeared periodically on my penis and scrotum: big, swollen, and sometimes neon purple zits. And painful, did I say painful? That’s pathognomonic for you. So pathognomonic that it made sex impossible for ten to fourteen days at a time. The old “in and out” was most definitely out. Can you imagine me coming at my wife in soft candle light with neon carbuncles bursting out of my thing?
Ah, but this is only the beginning; the beginning of a 25 year voyage into the shadow world of pain.
Did you know that there are, according to the Institutes of Medicine, 116 million of our countrymen living with intractable pain each year? And each one of us travels to the Kingdom of Pain by a different route.