Shambhavi Chaudhary is a strong, young woman who refuses to be bogged down by Lupus, a rather inexplicable autoimmune condition. She shares her approach to facing the challenges head on despite the fear and uncertainty associated with Lupus.
As World Lupus Day approaches there are many organizations around the world effectively working towards lupus awareness, and I am often asked - Why do we need to talk about lupus? Why lupus awareness?
I bet of all the weird and life threatening diseases, lupus would be the last you would have heard of. Yet it affects 1/1000 people in the country (India) of which 9/10 are women and yet it is alien to most people.
There was a time when cancer used to be alien and deadly with no cure and little awareness. But now, with the growth in research, there are more treatment options today.
Hence awareness will lead to better health facilities, effective medicines, affordable treatment, early detection, better understanding of dealing with this disease physically, mentally and emotionally both for the patients and the caregivers and possibly someday will even lead to a cure.
What is Lupus?
Before I write any further, 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. The reason for being afflicted with Lupus is unknown. It is often ascribed to a genetic stimuli.
After my diagnosis I was eagerly searching for lupus patients for a better understanding of this disease. When I searched for organizations I found just one in India, that too recently formed by the patient group Lupus Trust India.
Read more about this Lupus Patient Support Group in India
Harsh Realities of Lupus
After mingling with the members of this group and talking to the patients as well as doing some research over it, I stumbled upon a few harsh realities which make life with lupus sometimes worse. Some of them are:
- Lupus is a great mimic and hence not always detected at an early stage.Late diagnosis might hamper few of your organs severely. My lupus detection took 5 years as often doctors would completely dismiss anything being wrong with me and even concluded that it was all in my head.
- One has to undergo the nature of this chronic illness which includes dealing with its uncertainty of lupus flare ups (where one day you feel great and the other day lupus knocks you down), the stress illness cycle (knowing that you have a life threatening disease is itself stressful sometimes) and the impact it has on the caregivers.
- When it comes to the treatment of autoimmune conditions, conventional medicines have failed miserably. These medicines might disrupt your life with harsh side effects. For example, side effects of steroids include facial swelling, hair loss, weight gain, mood swings, anxiety attacks, depression, weak eye sight, etc. But yet you cannot always avoid the medicinesas they are a part of the treatment.
- The cost of treatment is so high that it has a financial bearing on the family. For instance my one year of lupus treatment with regular checkups, blood tests, hospitalization, biopsy and regular medicines has cost me around 10 lakhs. The range may differ depending on the severity of lupus from patient to patient. But what is disturbing is lupus is not yet covered under any government health initiatives or medical tax claims or under any insurance company.
- It hampers personal relationships as you may feel isolated due to restrictions of not being able to actively participate in social activities.
- The lifestyle changes:-for an athletic person who is used to running marathons, taking the stairs can be exhausting or someone who had to quit a thriving career because they required rest. Having to give up things you once loved and adapting to the new physical limitations can be emotionally draining.
As if all these reasons were not enough, society sees the patient as some crippled person and hence it creates the pressure on them to hide it, not discuss it and even stop the medications and hospital visits sometimes.
Being chronically ill is a continuous process of balancing the demand of the illness and your everyday life.
Back in May 2018, finally after 5 years of suffering different symptoms I was diagnosed with lupus nephritis class 5. Little had I known about this disease and in the same month it knocked me down with 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 4 days (a near to death experience). I was on 6 different kinds of pain killers including morphine but none worked. Reports revealed I had APLS or Antiphospholipid Syndrome (caused by Lupus), followed by thyroid, bp and dysfunction in liver. It was 10 days to go for the final exams and since I was unable to even move, doctors suggested I drop a year.
Fear and Uncertainty Surrounding Lupus
For anyone in her twenties, receiving a diagnosis of a disease that has no cure and can be life threatening is frightening, leaving you with a sense of uncertainty. One of the most challenging aspects of lupus is the lack of understanding that continues to surround this complex autoimmune disorder.
With drowsy eyes I saw my family dealing with their own bits of fear and frustration of why this happened to their kid. I was plagued by a host of questions: Is lupus more than my life? Was I now just a physically crippled person who can’t dream and achieve anything big? Is complaining going to reverse the disease or cursing the fate going to bring any relief to me, my family, my health or my career?
My inner self replied that if a disease could bring down humankind and its capabilities we would never have had Stephen Hawking (ALS), John Nash (Schizophrenia), Helen Keller (Blind and Deaf), Beethoven (deaf), Nick Vujicic (no limbs), all the Paralympics champions and the famous lupus celebrities themselves like Selena Gomez, Toni Braxton, Lady Gaga, Shannon Boxx, etc. They all believed in the endless possibilities of life they have as a human being.
That very day I decided I may have lupus, but it is never going to have me.
I wrote my exam and passed with 85% in the finals and 80% aggregate. Yes I do have days which are a struggle. Some days I win and some days I am knocked down by lupus. Lupus has taught me that there is no limit to the capabilities of my body or the mind, I am stronger than the strongest and I don’t let others judge me because I know they wouldn’t have walked even half 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.
How to cope with Lupus
The struggles can be made easier by learning stress management, doing activities you enjoy (if lupus has limited what you love, explore further, life can never be boring), seeking support (patients in india can contact Lupus Trust India), and learning to appreciate life and yourself. Don’t let lupus be the focus of your life. There has been evidence that maintaining a good diet, keeping regular doctor’s appointments, and with regular yoga and meditation, one can keep well with lupus physically and mentally.
Life is tough but then compared to what? I hope you don’t limit yourself and give up on the beauty that life is. I hope you don’t die thousand deaths before you are actually dead. I hope you believe in yourself and not just survive but live fully.
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.
“Supporting the fighters, admiring the survivors, honoring the taken and never ever giving up hope.”
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