“Loneliness is the first thing which God's eye named, not good” ~John Milton~
The federal government defines a rare disease as one that afflicts fewer than 200,000 people. I have Stiff Person Syndrome, a rare neurological disorder, estimated to afflict approximately one in a million.
One of the hardest things in living with a rare and disabling condition, for me, was the isolation of trying to find others like me...comrades walking the walk with me...shared empathy, not sympathy. There aren't any national organizations/support groups specific for my disease, no social awareness, limited medical experience, and continual explaining my disorder...which is freakish and bizarre in symptom manifestation.
After six years of being "the only one," lost in the loneliness of my rare diagnosis, I found a small pocket of 'stiffs' on the Internet...opening my world to sharing experiences and feelings with others who understood by living in my isolated world.
My silent screams of loneliness became keyboard clicks of communication with others...a unity of understanding. Emails turned to phone conversations which turned into personal meetings...friendships.
I wrote in an email or my SPS journal, "I felt I was left in a dark abyss without a rope or candle." Loneliness can feed hopelessness.
A spouse of an afflicted SPS individual wrote to me to express appreciation for my website and a better understanding of the syndrome. I was cut to the heart as this individual shared the loneliness and misunderstanding of syndrome rarity drove their afflicted spouse to suicide. The pain of this loss is still deeply felt years later.
I grieve for this couple. I understand.
I committed to blog for NORD (National Organization of Rare Disorders) this month. My own physical situation, along with the hectic 'normalcies' of life have derailed my intentions. I hope to publicly share a few thoughts about living with a rare disorder. Awareness...a flicker of light into the darkness of loneliness, despair, and loss of hope.
NORD Rare Disease Day - February 28, 2009
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