nobody really knows for certain what i ‘have’… despite years and years of probing and expostulating… the best the medical ‘experts’ can do is to conclude :
“unconfirmed suspected behcet’s”… ????…
so here i am, hanging in unconfirmed suspected mid-air… a lifetime of painful suffering labeled inconclusively…
behcet’s manifests in different ways for different people. a good article to read is the one in bbc health (click on link). other links can be found in my spunkykitty blog pages on behcet’s (click on link).
for me, it began at 5 with severe aphthous ulcers and angry itchy ‘bubble rash’ called erythema nodosum all over my fingers and hands. i developed serious juvenile arthritis by the time i was 10. vertigo, headaches, nausea was always hovering around as side dishes to the whole buffet. there was a whole lot of guessing and i was not officially diagnosed until i was 24, with follow up at 34. but the diagnosis was “unconfirmed” because i did not have uveitis (eye) complications.
a good 38 years have passed since i first began my journey, and now, there have been many new developments in the field of immunology. new drugs have been found to help alleviate and treat certain more serious / life-threatening situations, but there is also a tremendous rise in alternative support solutions.
behcet’s and growing up:
growing up was a mixed bag… looking back, perhaps the quirky childhood was in part also due to asperger’s…
i loved the long solitary hours spent in the garden with my leaves, fruit trees, flowers and bugs… staring, listening, smelling, touching, collecting… making things with all kinds of material, things that only i could understand… drawing, painting, writing stories, poems… playing piano – usually translating whatever i heard and fancied, or my own nonsense… (i hated reading notes and playing set pieces or scales ugh)… or messing around with my chemistry set… and reading reading reading voraciously… yes i was the weird kid who’d take my book into the shower with me, not just the toilet mind u!… but i hated the pain… it really wasn’t so much the isolation – i guess i was already inclined towards some form of autism or asperger’s because i really loved being on my own inside my own thoughts doing my own thing obsessively – but the pain was terrible and terrifying…
even more so the socialization process forced upon me… i learnt very early in life that people reacted very stupidly to what they cannot understand… i absolutely abhorred school – i didn’t like ‘making friends’, playing games which i considered silly, or just being in a room packed full of smelly noisy bodies… some teachers were angry, yes ANGRY, at my being constantly ill… and some students actually felt jealous… i developed a horrible phobia by 3rd grade, but still, i was packed off to school each day with a mouthful of painful ulcers, swollen arthritic joints and whatnots… my parents did not believe in home-schooling… everyone believed my ‘problems’ were entirely psychological… “psychosomatic” they called it…
but to be fair, i grew up at a time when the knowledge of autoimmune was at its infancy, and the social setting was not conducive for children who were out of the ordinary… even now, in this 21st century, being a ‘different’ kid still has it’s downsides… special education is still in its infancy, but there is hope if we choose it…
behcet’s and sex:
sexual awakening was another part of the painful traumatic journey… i cannot explain the pain of rejection from boyfriends (when younger) and lovers (when older) who could not and would not bother to understand why i was ‘different’… both physically and emotionally… “too delicate, too complicated, neurotic, just don’t taste/feel right” etc… deep down, no matter what their excuses were, it hurt all the more because i knew i was being rejected because of something i could not help or change… oh, of course, i was adored as much as i was rejected, but none ventured far enough into the labyrinth to find the wonderful things i am really capable of…
behcet’s and labels:
stress – of all kinds – was a part of behcet’s and me… constant acute pain meant irritability and high sensitivity to external stimuli… i was labeled ‘prickly’, ‘bad-tempered’, ‘impatient’, ‘difficult’, ’spoilt’ etc… because of the open sores (ulcers) and pain, i am not able to bear with polluted, dirty environments, especially toilets… i was labeled ‘princessy’, ‘diva’, ’snobbish’, ‘fussy’… even by my own mother… and although i have no doubt there are many behcet’s sufferers who have perfectly placid, easy-going, wonderfully simple universally pleasing personalities… please don’t any ‘expert’ tell me that severe illness has no influence upon one’s psyche and emotions… especially someone as colorful as me… i was labeled ‘neurotic’, ‘unstable’, ‘insecure’, ‘complicated’, ‘impossible to live with’… and made to feel deeply guilty for it…
love…
despite the labels… the most painful from rejecting lovers – ‘neurotic, impossible to live with, complicated’ etc… the most haunting from figures of authority – ‘lazy, underachiever’ etc… the most annoying from ignorant people i meet – ’snob, fussy’ etc… yet, somehow, i have been blessed with extremely loyal, supportive, loving and longlasting close friendships… i was a recluse, yes, but i did desire interaction and i did form close relationships, just in a different way than others, and with a very select few… my younger sister, with whom i spent a great deal of time squabbling, is now my closest and most faithful ally in life… and along the way, i somehow collected a variety of extremely loyal and supportive friends, who are still my sources of comfort, strength and encouragement today… a blessing and indeed an achievement – because love takes two to work doesn’t it then?…
being me…
behcet’s or autism/asperger’s or just personality dysfunction?… whatever… i have found at last a great measure of peace, along this wonderful special journey…
i have no bitterness against others, nor any regrets for my own choices… am i more beautiful because of or am i more beautiful despite?… i don’t know… but i do know that i am beautiful… and i love me… i have come a long long way…
