A d v o c a t e R e e a n n a H a R R i l a l t e l l s K a R e n a n n M o n s y w h y l i v i n g w i t h l u p u s i s l i k e wa g i n g w a r w i t h y o u r s e l f — a n d h o w s h e m a n a g e d t o f i n d p u r p o s e i n p a i n There Were
p until very recently, most of us had probably never heard of the chronic autoimmune disease called lupus ( understandable, considering the disease is so rare that only an estimated 0.05 per cent of people in the world have some form of it.) And even if we had heard of it, chances were it was either through the TV show House ( whose title character Dr Gregory House insists several times during the show that “it’s never lupus”), or becaue we kept up with pop star Selena Gomez, who announced her own battle with the disease last year.
What’s it like trying to live everyday with an immune system that’s essentially trying to kill you? Reeanna Erani Yogeeta Harrilal is a 33- year- old native of Trinidad and Tobago, who first started experiencing symptoms of the disease as a child. After years of misdiagnoses — unfortunately, all too common in the case of lupus patients — a test for lupus
To complicate matters, I was asthmatic — I still am; but, growing up, my asthma was really out of control and I had to be put on oral steroids. As I grew older, and entered adolescence, my fingers, knees, and joints began to ache as though I was 95 years old. I was only 15. Simple activities like running or lifting things became really difficult because my fingers would be very swollen. I was put on strong painkillers for the pain, and managed to pull along for a couple of years. But around 17, I got really ill — to the point where I was bedridden and would get really bad fevers every 6- 8 months. The fever, however, always felt more like it was inside me… and it wouldn’t break.
By now, I was being tested for all sorts of possibilities, from HIV/ AIDS, lymphoma and leukaemia to tuberculosis and even pregnancy ( due to the abdominal pains — even though I assured the doctors there was no way that was a possibility!). It was a barrage of testing and I had to go through the entire process. One doctor did suggest we test for lupus and mixed connective tissue disorder. But there wasn’t a lot of information about lupus at the time, in Trinidad and Tobago, where I lived. I remember going to the public library in Trinidad — because we didn’t own a computer — going through the encyclopaedia and looking for lupus under the letter ‘ L’. And when I learnt that it was a chronic, debilitating autoimmune disease, I got so scared that I no longer wanted to know whether I had lupus or not.
Basically, if you have lupus, it means your immune system cannot tell the difference between foreign invaders and your own body, and therefore attacks and destroys your own organs and tissues in the process. The information in my hands said if I had lupus, I’d die in 10 years — and that was if I was lucky! I suddenly felt so cold, and all I said was: I don’t want to know — because if I do, it’s just going to kill me faster. I was a kid and it was too much for me. I wanted to bury my head in the sand like an ostrich, and hope it would all just go away.
inspiration to ALL: r w mm m W ld L D M 10; w n l y all aw d w m l w t d d & t b