Imagine yourself lying down; surrounded by a number of people piercing needles in your body! How does that make you feel? If you have ever read the story of Gulliver’s Travels by author Jonathan Swift, you will know how the lilliputs attacked Gulliver by piercing arrows in his body, which he actually felt like needles. My story is different. The violent disease Lupus has attacked me instead of lilliputs. Still, the only thing familiar is the physical pain of needles and the mental pain of the trauma.
Lupus or Systemic Lupus Erythematosus (SLE) is an autoimmune disease where the immune system of the body mistakenly attacks healthy tissues and can even cause multi-organ failure. It can affect the eyes, heart, skin, joints, kidneys, brain, and pretty much every organ. It can affect any human being, at any age, and it is tough to diagnose because it mimics many other kinds of diseases. The activity of disease varies from mild to extremely severe, depending on the patient. No two patient have similar disease activity. It is different for everyone. Lupus is a highly misunderstood disease, and very few people know about it. A lupus patient has to spend the whole life explaining everyone what lupus is and how dangerous it can affect the patient. That is the reason why raising awareness is such an important issue so that people can be at least empathetic towards the patient instead of misunderstanding him/her.
I was diagnosed with Juvenile SLE in 2013. Diagnosing that wasn’t as easy as I stated it in a few words. I was born in the year 1999, and since then, the suffering had begun. When my age was day ten, I suddenly had 102°F fever out of nowhere. Since then, I kept having a high fever every month. 104 -105°F fever was common for me. I had so much pain in my bones, joint, had swelling in pretty much every joint, tonsilitis, rashes all over the body (later we knew that it was common in lupus including the butterfly rash ). I was first hospitalised when I was in the first standard in school, with an excessive stomach ache, doctors said I had fatty liver and had jaundice. Later on got hospitalised consecutively three times again in class 2 with extremely high fever, with the highest temperature being 107°F and swollen joints, massive body ache were familiar. Doctors gave me steroids since then. Few doctors said it was rheumatoid arthritis. Then we went to Vellore. There the doctors suggested penicillium tablets. Pretty much got misdiagnosed every time we took to attempt to get the best treatment possible. Lupus mimicked so many diseases and manifested itself in such a form that doctors got confused. Eventually, we tried to get the correct diagnosis, but we could not. I tried all the trial and error method to know what disease I had gone through tons of ups downs in life. I fell sick immensely in January 2013 with very high fever, vomiting, could not wake up for days. We visited Dr Sukumar Mukherjee, who suggested me to do all the blood tests without having a single medicine to treat the fever.
This method clicked, and with that high fever, I did all the tests and eventually got diagnosed with Juvenile SLE. Later got admitted in three different hospitals for treatment, did a kidney biopsy. It was found that my kidneys were damaged with stage IV/V SLE. We were unable to understand what was going on in my life. I had no idea what the disease was. Every single day I thought when will things get better, why I do not feel better after taking all the medications daily. We went to Bangalore, Narayana Hrudalaya, for a second opinion about my treatment procedure. In Narayana, I was under Dr Rammohan Bhat and Dr Aruna Bhat, who made me understand the first time how dangerous my disease was, and how helpless they were because lupus does not have any cure. At 13 years age, they explained to me. I will have to undergo chemotherapy, mycophenolate, how I was under massive steroids. They were clear on my face that lupus patients cannot conceive, how lupus can also manifest other autoimmune diseases and in rare cases can form cancer as well. But they also motivated me that I have to live life with lupus and its possible to be happy even after so much pain. Since then, my toughest journey began. I went through chemotherapy, six dosages of cyclophosphamide, steroids, Methyl Prednisolone, his and many other drugs; the list is pretty long.
I developed substantial swollen moon face, gained immense weight due to steroids; very few hairs were left on my scalp. I looked so ugly. My friends could not recognise me when they first saw me. I was kept in complete sanitised space and people were not allowed there because their germs could infect me and even cause a relapse of the disease. Due to this, society thought that I had such a condition, maybe they could get infected, so they avoided me, gossiped behind my back in spite of showing slightest empathy. I went to depression due to such huge pressure — one side the painful treatment, pierced with needles, and the other side the mental trauma. Every month I was hospitalised for my pain treatment. I continued my studies even with all the painful condition. I had taken antidepressants and other psychiatry medications for around six months to get myself back. There had been a phase I did not talk to a single person. I never saw myself in the mirror. After one year, I made tremendous progress, my body accepted the treatment, and I became stable. Lupus flares were common, but I continued with my life.
Always remember you are not your disease; your diagnosis doesn’t define you; you have to take control of your life. Do not let your condition take control over you. You are more than you think, you will shine no matter whatever the circumstances are! The 10 Life Lessons Every Single Woman Should Learn To Follow.
Again in August 2018, my disease relapsed suddenly. This time my heart was affected, I was diagnosed with congestive heart failure, Myocarditis and Macrophage Activation Syndrome (MAS). Only 10% of my heart was working. I was kept in ventilation in ICU for several days. Doctors confirmed my family that no hope was left, maybe I would live for another 72 hours. In that condition, I was pierced with needles brutally every day because my veins clotted and the IV Channel got contaminated. A stage came when not a single thread was left to make an IV channel except in the neck and chest region. To carry on the treatment, to save my life, they had to pierce huge painful needle in my neck so that they could inject the medications.
I could feel every single drop of medication that ran through the needles, it was so painful, but I was grateful because it would help me get back my precious life. I was not allowed to drink water for over seven days, could not eat food for over 25 days. That day I realised the pain of the poor people who starves almost every day. I knew I have huge duties left to do for the unprivileged people who aren’t lucky enough to even get food and shelter. I got discharged after one month, that day was victorious to me. It was a rebirth for me. People worried about me. They thought about how I would react. They thought I would get into depression once again. But you know what everything changed, I grew stronger, and today I motivate tons of people through my counselling sessions, and I help people to realise how grateful we should be for little things in our life. A special thanks to Dr Sukumar Mukherjee, Dr Parthajeet Das and Dr Subhasis Roychowdhury for dragging me out from that condition. You might also like the Challenges That Are Faced By Every Women In India.
I wrote the whole article just for one reason, to make you realise how extraordinary your life is, to have faith in yourself and nothing can tear you apart. No matter how many times you fall, get up and start all over again. Life is beautiful, and so are you! Stay Blessed. You might be interested in Unassuming Lifestyle Habits That Will Keep You Healthy.
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