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.”
For more info visit:
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.
Dear Shabhavi, Thank you so much for sharing your journey. You are one AMAZING and STRONG lady. I have a dear friend who has lupus and this helps me better understand her struggles. Blessings to you!
Oh thanks sue, m glad this article could be of any use to you in understanding lupus and how sometimes life could become so tough for us.
So proud of you! Keep fighting. Lots of power and love to you!
Thanks a ton ishita for all the blessings and love. Stay blessed
Between your successes and your personal battle Shambhavi you have been an inspiring story.
Many a Strength, Power and Love to you.
This saying holds true in your case…Tough times don’t last long, but tough people do…
God bless !!!
Thanks a ton aunty for all the nice words and blessings. Surely the the tough times are not going to last long now. Will always battle with Grace and strength
May God give you courage to fight nd recover as soon as possible.My blessing is with U my dear daughter.
Thank you so much mami. ?
I more much give best wishes to you :your health : thought : strong will power :God Bless always With you .
Thanks a ton mam. Hope to fight and come out of it.
Lots of power and blessings darling. I know you are strong and beautiful. Stay blessed my love.
Thanks a ton Uncle. U have always been helping and guiding me through tough times. Thanks for always showering the love and blessing.
तुम्हारा साहस और धैर्य सदा बना रहे। ईश्वर तुम्हें अपार शक्ति दें।
Pranaam mausi, thank you so much. Bus dua aur aashirwad hai aapka.
You have always been a bold and strong lady in my life
And i knw the strength inside you is still burning
Thanks a ton darling. ????Thanks for the constant support.
U r so brave shambhavi , we are very proud of u , u go girl..?
Thank you nimmi????…. Yo girl. Will always be brave and fighting with help of ur love and blessings.
U r a fighter, lots of happiness coming your way… Go get the world bebe????
Thanks a ton ??? . Surely will always live the life I wanted.
The world needs more of you girl! You deserve the BEST and never compromise for anything less. THANK U for sharing this?. I am sure it will be of help to many?
Thanks a ton girl. I will be glad if it helps even a single person learn to love life and self. Lots of love to u.
I m proud that I have such a courageous friend like you
Thanks a ton darling?
God bless . Every moment become more powerful energetic for you to overcome from any kind of problems.
Thanks a ton Sir. God gives it’s toughest battles to the bravest soldiers
Shambhavi you are a true fighter girl.Hats off to your courage..You are such an example for those who commit suicide n quite from their problems.
Thanks a ton . M glad I could inspire and stop such heinous crime to destroying self. It took Mee time to learn to love self. But lupus taught me the importance of life. How beautiful and important it is. And doesn’t matter what happens, it’s always worth fighting for life.
You might don’t know me but I do through your younger sister .
Read your life’s struggle .
You are incredible . A true warrior .we all pretend to be a warrior in our lives but seeing your journey our lives problems seems pretty much nothing.
May the Force be with you.
Thanks a ton shashikant. Life is worth all the struggles and battles.
After you gain enough power , try motivational public speaking .
People will learn from you.
Sure shashikant. Will do that.
Sure will try thanks a ton for the blessings and prayers.
One Amazing soul. You are a true fighter.
Thanks a ton Kishore.
You are truly an inspiration for everyone who is fighting out this disease!
My wife has been diagnosed with Lupus Nephritis Class VI i.e. the final class.. it started with her first pregnancy 3 years ago in 2016 when she suffered a miscarriage. After 6 months we tried again for the pregnancy but this time we followed with all tests and then Lupus was diagnosed to a moderate level.
However, doc suggested to continue with the pregnancy plan with a self injecting medicine to avoid blood clotting due to lupus. It went for some days till the urine report came where she had huge priteinuria and raised creatinine level.. doc suggested to terminate the pregnancy and reference to a nephrologist.
Then the usual medicines with steroid and immunosuppressant continuef for an year.. her first biopsy was done which suggested Lupus nephritis class lll.. we started looking for other opinions out of Pune and 3 docs rejected that it was Lupus since there were no other symptoms.. we continued with another nephrologist in Pune and it went on for an year till things started looking good and the medicines were almost reduced and stopped.. but it lasted for only few months and the criatinine level started to rise again from 1.6 to 1.9.
The second doc even suggested trying for pregnancy but we were afraid that it could worsen it so we stopped seeing the doc and started alternative medicine with unani ..we did this till this July.
Now as we wanted to get some conclusion and know the possibility of pregnancy so we started with another doc refered by our unani physician.He also kind of rejected lupus and advised for second biopsy as it’s been 3 years now.. we did the biopsy and unfortunately it also suggested lupus nephritis but with more severe damage as it raised from lll to Vl.
So this the overall history for my wife and now we are waiting for some blood tests after which doc will start medicines.. currently she is on BP medicines only.
Please let me know if you have any suggestions or share your thoughts.. it will mean a lot for me and my wife.
She’s 31 years old and hoping to come out of it one day and become a mom.
Thanks & regards
I have lupus since 2013 since my 2nd live baby is born. I hate this disease to the core, but it has made me more patient. I am divorcee now… My husband left me since I got this. Feel sad that God is also not helping good people. Lupus has taught me to fight for myself. I live for me and my kids. They are self esteem booster, otherwise i may end up into depression and frustration.