Life seldom turns out the way we expect it to, especially for anyone in her 20s. Receiving a diagnosis of a disease that has no cure, a disease that could be life threatening is a frightening experience and it leaves you with a sense of uncertainty.
I had always been a super active, enthusiastic, multi-tasking lady, because if humans are the greatest machinery why not keep exploring thyself. None of us know what life holds for us but still, we plan it. We always have plan B’s but sometimes we are hit hard by fate where all our plans shatter. While I was still planning my trips, trekking, studies, career, love, life and adventure, I was hit hard by reality. I was hit by an invisible illness–lupus.
Before I start with my story let me tell you what lupus is. Lupus is an autoimmune disease, which means that your own immune system attacks your body — potentially every bit of it — causing widespread inflammation. The inflammation caused by lupus can harm everything from the kidneys, skin, joints, and blood cells, to the lungs, brain, and heart. However, the physical and mental implications of the condition can be vastly different from person to person. Shocked??? Wait, I have not yet started.
It all began back in 2013 when my platelets abruptly went down, and I was told I had idiopathic thrombocytopenic purpura (ITP) and I often used to get ill. After joining college, though I was active in different groups and also in academics, I started having fatigue, frequent fever, anxiety attacks, dehydration, skin issues, etc. When I went to my doctor, the staff ran blood tests, but nothing ever pointed to a specific diagnosis. I started gaining weight. I saw other doctors; they thought it was all in my head. For a time they didn’t believe I was physically sick until eighth semester when my digestive system clearly stopped responding, and I was having severe fatigue and skin rashes. After a month of diagnosis, followed by a kidney biopsy on May 11, 2018, it was revealed that I had lupus nephritis class 5 (where I had an 11gm of protein loss–110 times more than a normal human being) and with medicines, I was responding well.
Little did I know what more this highly misunderstood and devastating disease could be. I remember jumping around on May 14, 2018 (with hopes that I had defeated lupus) when suddenly I could not breathe any further. I was rushed to the hospital where I came to know I had a clot in the lungs which was blocking the oxygen supply. I had developed pleurisy (inflation of lungs where in my case, it rubbed the ribs with each breath, so every breath felt like breaking of the ribs) which landed me in ICU for four days. I was on six different kinds of pain killers including morphine but none worked.
With reports, I got to know now I had APLS (antiphospholipid antibody syndrome) (caused by Lupus), followed by thyroid and liver dysfunction. I could barely move or sleep and had a swelling on the left side of the body. I was on high dose of steroid which made my face five times bigger. It was 10 days to go for the final exams and with my position of not being able to move, doctors prescribed me to skip a year. I had been a topper, and now I was not losing to any competition but my own body. I had no other choice but to fight back. The very day I decided not only would I write the exam but will end it like “Beckham.”
High on steroids and painkillers, I was use to being drowsy, breathless and my hands would shiver (making it barely capable of writing). Eight days before the exam I was discharged, and every time I was not sleeping, I was studying or trying to write. Thanks to all the teachers of the CSE department for supporting me and praying for me every time, especially our respected and loving HOD, Dr. Dilip K. Sen. The CSE department assured me that my room was ground or first floor, as I was unable to walk, and that a teacher would be there in case I fainted. The day the exam started I told myself, I am not losing to my body. While writing the exam most times I was drowsy, my brain blank, and my hands swollen from writing but still I never gave up. I remember it was May, 31, last day for our HOD sir at the office. He had come to the exam hall to meet me, bless me and seeing my condition he shed his tears. Well, I cleared my 8th semester with 85 percent and 80 percent aggregate in engineering.
The battle did not stop there. My kidneys were still 70 percent damaged and I was told to take a year break and not work. But was it ever going to stop? Had that one year given me the guarantee that my lupus would be cured, I would have taken it. I knew it was incurable and your disease cannot be an excuse for giving up on your life, your dreams, and your capabilities. It took millions of year for humans to evolve. It’s the greatest gadget in the world so how could I have given up?
I requested my company to postpone my joining and I started in August rather than July. With the college getting over and friends parting, being alone with this chronic illness landed me in severe depression (also because lupus affects the nervous system) and here I was suicidal and clinically depressed. (Makes sense, right? You had not even started your life and now you have a deadly disease where you don’t know how long you are going to survive.) Still, I was just doing fine for others at the office. No one ever knew what was going on. All of them considered me to be a highly active, happy-go-lucky girl. You never know how strong you are until being strong is the only choice you have. One fine day I decided not only am I going to beat my fears but be the hope for all the people who had given up on their lives over their limitations. All this time yoga helped me a lot in getting over my fears and building the same confidence again.
After searching a lot, I got to know about Lupus Trust India (founded by lupus patients in Kerala) and to my shock, I came to know how common it is: 1/1000 people have lupus, and yet it’s alien to most of the people. I often hear, “You don’t look sick, ” or “It’s okay, have faith, at least it’s not cancer.” It’s hard to convey to people how I’m feeling and what the practical consequences are. Writing this is painful. I feel stalked by shame when I have to explain why I can’t go out in the evening because I’ll be overcome by fatigue. Or why I can’t sit in the sun because I’m photosensitive, and the sun makes my joints ache.
Lupus patients are unrecognized by the health industries, they are often exploited, misunderstood at the workplace and by the public (as it is an invisible disease), and are not covered by any health insurance companies in India. Indian mentality has a skeptic view of lupus patients as paralyzed, and due to lack of awareness, delay in the diagnosis and expensive treatment (unaffordable to a large majority). It has become a necessity that this disease should be known, understood and recognized. With the Lupus Trust India, we aim at doing the same, and I work for the welfare of all my fellow “lupies.”
Every alternate Saturday I am in the hospital while others enjoy their holiday. Some days I have procedures or hospitalization but I am back in action and on work the next day. But do I pity myself? No, never. Lupus has taught me that I can never be the limitation of my body or the mind. I am stronger than the strongest, and I don’t let others judge me. I know they won’t have walked half a mile of my journey with a big smile that I wear each day. Yes, I don’t look sick because I have chosen to not let a disease define me.
That’s me–a lupus warrior–fighting an ugly war inside my body every single day. I may not win this battle, but I will not go down without a fight.
“I might have lupus, but lupus will never have me.”
“Supporting the fighters, admiring the survivors, honoring the taken and never ever giving up hope.”
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Submitted March 3, 2019
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.