Shambhavi Chaudhary is a gutsy young lady living with Lupus who decided that life is too beautiful to allow a condition, however debilitating, to take control of her. Accordingly, she started pursuing a normal and active routine and also went vocal on social media to inspire her fellow Lupies.
Is Lupus considered a rare condition? Or an autoimmune condition difficult to diagnose?
Lupus, interestingly, is not a rare condition. According to the Lupus Foundation of America 1.5 million Americans, and at least five million people worldwide, have some form of Lupus. Sadly, we don’t have an estimate figure of patients in India due to the taboo that revolves around this highly misunderstood, deadly and chronic disease.
Like Mystique from X-MEN, who could take different forms and disguise people, Lupus disguises you in a similar manner. Lupus is a great mimic. The symptoms differ from person to person. Often the early symptoms come and go, and even overlap with other diseases, hence often making it difficult to diagnose. And this delay in diagnosis often results in a body organ being irretrievably damaged.
What, according to you, is the toughest challenge for a person with Lupus?
It’s kinda funny, how life can change
Can flip 180 in a matter of days
- Lines from the legendary hit song ‘One Love’
That is exactly what Lupus is!!
I feel the toughest challenge for a person dealing with Lupus is the uncertainty and ability to attack any organ of the body. Imagine…..your are jumping and dancing today, and tomorrow you might land up in an ICU. This uncertainty can shatter your dreams, hamper your plans, your career, as well as your social and personal life to a great extent. And it could, in time, result in not only stress, but a cycle of illness where the predominant fear is being struck by Lupus yet again.
How does society in general react to a person with a condition? How much have you been on the receiving end?
When it comes to a disease, society has set some judgmental benchmarks to decide what an illness should look like. If you don’t fulfill the criteria, you are possibly only an attention seeker.
People usually have some misconceptions about people with conditions:
- You should look like an archetypal ill person as depicted in movies, with tubes inserted and on oxygen support. People should be familiar with the name of your condition
- You should be middle aged (most of the Lupies (People with Lupus) have it at an early age)
Unfortunately, Lupus being largely invisible, it becomes difficult to convince people of the condition, particularly as the issues also differ from person to person.
I have also had to be on the receiving end of phrases like ‘At least you don’t have cancer’, ‘It’s all in your head’, ‘This generation is lazy’, ‘We used to work so much at your age’, ‘We were so fit at your age’, ‘So now it’s cured?’ etc. It definitely hurts when people do not take your sufferings seriously. But the only option is to move on and focus on controlling Lupus and keeping it flare free, which is achievable.
How have you taught yourself to move on?
I firmly believe in Sadhguru’s saying,
“When unpleasant things happen in your life, you can either choose to be wounded or wise”.
While most people suffer Lupus, I consider it a blessing in disguise. Once you accept it, there is no friction left like “why me”, “what will happen” or the comparisons with others. Your sole question should be “okay what’s next”?
Remember that moment in a hero’s life when he has all the flashbacks/realizations that give him the strength to fight the battle? My near-death ICU experience (May 2018) was the one for me. Most people live as if they are mortals, stressing about past and future (what will happen) and I was no different. But in that moment, on the bed, you only know of the “now”. Now if I die “Have I lived a life I desired?”, “Have I played it big”, “Did I do justice to the life I had?” or at least “Did I love more/laugh more”? If life is so fragile, why the hell did I stress about a 1000 stuff that won’t happen if I die today. In that moment close to death, I discovered life (all those moments I rejected living by just stressing/cursing/blaiming/etc).
Growing up reading Stephen Hawkins, John Nash, Nick Vojicic, Helen Keller, how can you not believe in the magic humans are? The super powers we are inside. A limbless superhuman swimming/surfing/trying adventure sports, the greatest physicist of the 20th century who had degenerating motor neurons, A blind woman who was an author and an educator and a person with schizophrenia who went on to win the Nobel prize for economics. Now if this is not magic, then I don’t know what is! And their bodies did not limit who they became, then why me or you? And if it doesn’t intrigue you to think how super you already are, I don’t know what else will. This led to the inner journey of finding the super human I was.
I decided that Lupus should not rule me. I jotted down what I want to do (short term goals), how can I make my health better from here on, in what ways can Lupus pose as a barrier and how can I overcome it. Being stubborn added advantage to my journey. Over the years, I have defeated all the fears I had around Lupus and it doesn’t scare me anymore. It might always be there but it doesn’t have to define me.
For instance, I cleared my bachelor’s final exam, 14 days after the ICU incident. I joined my first job 3 months after being diagnosed with Lupus nephritis class 5. I kept going to office regularly with swollen face and legs and high doses of steroids and other meds that caused too much dizziness and fatigue. I still remember I had taken Rituximab on the weekend and went to office the following Monday. Office was a great distraction from Lupus. So, I continued with my professional life. I have taken part in all the extra circular activities at office and been highly active. I went on to win badminton doubles 5 months after my leg injury (to be noted I don’t have compartment in the right leg -- steroids make the muscles weak, which in my case aggravated due to my dancing etc. So the doctors removed the dead muscles in my leg, and opened the compartment in the leg. So I don’t have any muscles in my right leg) and yes, I have trekked and done scuba with the same “broken legs”. I always wanted to explore the world, so I made sure I was travelling often (until the pandemic) keeping sun exposure in mind. All Lupies are photosensitive, some develop rashes, I feel dizzy, and my skin starts becoming reddish with exposure to the sun. Lupies will be asked not to go out in the sun.
An active life has helped me cut down my medicine intake to about 1/4th of what I started with 3 years back and I have been living symptom free for 1.5 years now. Had I not taken the first step of joining office, I would have let Lupus limit me. It would have scared and haunted me. The idea of sharing all this information about myself is basically to empower others with a similar condition. I am just a stubborn Lupie who decided she would define the course of her life and not let Lupus take over. I am just a mirror holding the possibility of those with Lupus. So does it mean I am all sorted? I never slowed down? I don’t have my ups and downs? I never said life is all green or all grey. Life is a roller coaster, enjoy it! One day you would eventually die but living with fear kills you everyday. So would you like to die a thousand death or live one day at a time like a king? . All this time I was just a seeker, I still am, exploring the limitations I could break and hence tapping to my super powers. No I can’t make you fly, or fly myself like superwoman. By super power I mean developing the control on your body, thoughts and emotions and living the life as if it has no boundaries.
How has being a Lupus advocate helped you?
By now you would have known that I read a lot and by that I don’t mean Google search reads. There are many webinars that I have attended and many Lupies I follow who have been advocating for quite some time. Having multiple organs affected due to lupus, my body has been my biggest advocate. I keep my horizon wide and broad and don’t limit myself to only reading or attending webinars/seminars on Lupus research but I also read a lot of self-help, inspiration, motivation, health journals on Lupus from some of the trusted websites and keep sharing the same with my doctor. Earlier we used to have a lot of discussions regarding the same.
While seeking the answers to how can I get better now, I went on accepting meditation, yoga, exercise and healthy food as part of my everyday life. And the results are magical.
How are you helping people with a similar condition?
Even before writing for international magazines or starting my Youtube channel, I would help Lupies on calls or group chats (Lupus Trust India Support Group) by listening to them, offering a solution or just helping them understand the super power they are. I can totally relate to many of them. I have been there. Obviously getting diagnosis for a disease that has no cure at an early age is not easy to digest. While my batchmates were going on trips with their first salary, I was spending them on meds and doctor follow ups. Though surrounded by a lovely supportive family and few constant friends I have in my life, I was quite alone inside, flooded with questions because Google did not answer everything, and I had many questions. Even in the 21st century, it’s so alien. We don’t know the cause yet, we don’t have a cure yet, we don’t even have much awareness about it. Support groups, though, were a revelation for me. I was amazed to know there are so many Lupies in India alone. I decided to advocate because I promised myself I won’t let another Shambhavi feel alone and puzzled ever.
Besides, medicines and treatment for Lupus are very costly; many can’t afford it. Unfortunately, there is no special health privilege given to Lupies in India. No insurance covers it (unless you have a company insurance), no allowance is given in exam age bars (recovery takes few early career years from us all and by the time we recover many miss out on schools, colleges or govt exams). Since Lupus can affect multiple organs (skin, brain, kidneys, blood, heart) and is invisible, it is hard to explain to families sometimes and hence many are misunderstood and left alone in this battle. Thats why I chose advocacy.
While advocating, I have met some fantastic Lupies with inspiring stories. Their journeys amaze me and I get to learn a lot. They have taught me more patience, more love, more resilience. One thing all of them have in common is hope. Once you start caring about someone else’s pain, you stop thinking too much of yourself. Suddenly all your pains, worries and complaints fade and you become more grounded.
Have people responded to your writings and your social media messages?
The response has been overwhelming. I am glad that I could connect with so many of my wolves and butterflies (I refer my fellow Lupies as wolves and butterflies as per the channel name). I am glad I could be their voice. I can understand when some Lupies tell me they feel at home with my words, because Lupus is highly misunderstood. My attempt to inform more people about Lupus and help Lupies break their pattern makes them feel home. They feel connected and see hope. There is nothing that makes me happier than making someone conscious of their own super powers. And their love and support give me more strength to keep going.
What was the idea behind your Youtube channel?
When I thought of starting a Youtube channel, I wanted to do something different since no one watches till the end if they don’t feel connected or if it’s not catchy. We tend to wallow in self pity, specially if we are confronted with an incurable condition. I wanted to cheer up my fellow Lupies and show them hope and fun in the content I put out there. Life needs to be experienced in all its elements, and that is my message to them. I am okay if Lupus is in your body, I am just not okay if it is in your head.
Has the ongoing pandemic been an issue in your treatment schedule?
By grace, my Lupus has been inactive for 1.5 years now but yes regular check ups are a must. So the pandemic has prevented us all from routine physical checkups . But thanks to technology, I have been virtually connected to my doctor whenever required.
