The happiness was bestowed upon me when a very reputed school offered a school coordinator job. I, Ravijot Kaur, being a postgraduate in engineering and then quitting my job as a software engineer to embrace motherhood with my two little beings, life has been unpredictable.

Ravijot Kaur – My Story

Hi, I am Ravijot Kaur. Signing in and fastening your seatbelts as I take you through my rollercoaster ride.

A new horizon, a new day awakened me for a new journey toward teaching and coordinating in the school. The work culture was excellent, and in no time, I was the best among the lot there. I grabbed an excellent opportunity of anchoring to present my vocal skills. The engineering background exposure worked here!!!. 

I was admired by the highest authorities of school management and other schools. The newly found admiration made me believe that I had grown and learned with my kids. I was thankful to God for my achievements and laurels, totally unaware of God’s plan for me. The coming days were life-changing. 

Ending of 2018 and the big fat Punjabi weddings lined up known for their dance parties to sangeets, flaunting dresses to posh makeups, exotic foods to breathtaking ambiances, I was having a gala time with my family and friends. How did I know that the following social function I would attend is after a month, a few months, a year, or many years and with a disability?

From a healthy and happy kid to a tall, attractive, independent girl, marrying a handsome and understanding man, ultimately bearing and rearing two beautiful buds, who would have thought our little world would come crashing down in days. My life turned into havoc in my early 30s.

It all started with an unexplained low-grade fever in December 2018, which continued for like three months. In less than 99.5 centigrade, my body was lying lifeless on the bed. Yes, I was fatigued, my hands were weak, and my legs were weary and drained. I had discomfort and exhaustion in those parts of my body which I thought could never be in pain. But, as per the doctors, less than 100 centigrade is no fever. 

The primary blood markers were regular. It was exhausting me mentally, too, and I was clueless about what was wrong with my physique. Sometimes, I used to ask myself, “Am I faking it?” But even if I wanted to get up, my legs were not friends anymore. I felt like I had kilos being dragged with my legs. Four steps seemed like 4000 steps !. But, yes, people judged me. And not just judged but questioned for,

“so less temperature, you would be fine. We used to do everything with this much fatigue.”

“if you want your body to move, you will have to move your hands and legs and do some work.”

“At least do something so that your limbs keep working.”

“You overthink. The fever is just in your mind.”

“Keep yourself busy somehow, don’t keep lying on the bed.”

These remarks and comments only increased my suffering. I don’t know why I was considered faking it for such a long time. Who would fake being unwell for a good two months?

I lost my job because of no energy left in my body. With time, my condition only deteriorated, but the so-called fever never touched 100. The doctors diagnosed me with tuberculosis (liver involved) and wanted to go for a liver biopsy. But, it did not convince my father as all liver parameters were working fine. I was worried and cried inconsolably. My husband decided to go for a second opinion. 

Thanks to the government medical institutions, which considered the clinical symptoms that were worsening day by day in my case. In medical terms, I faced a massive hair fall called alopecia, which was a dynamic marker in my diagnosis. That time was very depressing for me as well as for my family.

Finally, after intensive tests, numerous bloodwork, and biopsy, my doctors diagnosed me with SLE (systematic lupus erythematosus) lupus nephritis class 3 and 5. I had never heard of such a disease, and here I was, struggling to lift my hand and forget my body. I was relieved that a diagnosis was there, and simultaneously, I was crying my heart out as to what disease is this. I was scared of what will happen to me, my body, my kids, my career, my life, and my family. 

I started thinking about what would happen if I didn’t live anymore. Who will be there for my little kids (3 and 5 years of age)? I was petrified to the core. I cursed God for not making me a Tb patient as it was a prevalent disease and is curable, unlike SLE. I had no clue what and how this will impact my life and how. 

When I googled, I had to shut down my phone as there were fatal cases of this heinous disease which frightened me even more. I was in the hospital bed, admitted to the rheumatology department. I stared at the ceiling, questioning my destiny, my faith in God all shaken up, and wondering weirdly, if it had been Tb, my life would have been easy, no?

SLE is an inflammatory disease when the immune system attacks its tissues. Strange !!!.. how is that possible? How can my body’s defense system start attacking my joints, kidneys, skin, heart, lungs, and other essential organs? In Layman’s language, it’s as if a king’s army starts attacking their kingdom rather than the foreign bodies. So, we cannot say that the defense system or the army is weak. 

Instead, it is super active. But it doesn’t know what to attack, so it’s a disorder. It is how my doctors managed us to explain! Here, the immune system picks up one or multiple organs and starts rejecting them by damaging them, and sometimes, the damage is irreparable. Luckily, doctors diagnosed me quite early, so my kidneys are revertible to the damage done. Amen!

People are unaware of it. Whoever has it, they only come to know first if it is not in family genes. It is the level of unawareness of this disease. There must be many young girls or boys suffering from such a situation, and I had such thoughts. Through this platform, it’s my little effort to convey that it’s not that bad. 

With proper management, we can lead a day and healthy life. Lupus often is called an invisible illness, so it becomes challenging to convince people what you feel and go through, your magnitude of pain and fatigue. Moreover, no two lupus patients have the same symptoms. It depends on the extent of the disease activity and if there is any organ involvement or not? As a result, the individual is left in loneliness. It results in chronic depression as the person himself is clueless about what is happening to his body.

My heart goes out to them. Please, don’t feel alone in this battle. Broaden your vision, and you will find fellow lupies struggling, living, and shining for hope. Today, I have accepted myself and started prioritizing my health, and believe me, if you don’t give valuable time to your body, you will be forced to do it.

Fortunately, in march 2019, the modern medicines showed their results, and my health improved. I was getting back my energy. I no more felt moving like a zombie dragging quintals of weight tied to my legs. I was happy and was trying to bring my life back on track when dengue hit me hard. 

Dengue punctured my whole body in a very harsh manner. I don’t know what was wrong with my hands and feet. They were in immense pain. My body could not hold my hands upright. My dad used to hold my hand for me, imagine !!. He used to feed me with spoon-like tiny babies. Same with the feet, I could not lower my legs and forget about touching the floor. 

Whenever I used to touch the floor, I felt like thousands of sharp knives pouncing on the barefoot. My dad made all possible efforts to ease my pain, caressing me or massaging me, but no relief. Luckily, my elbows were the only moving limbs. Three people picked me up to go to the washroom howling in pain. I prayed to God to either make my hands and feet pain-free or make my body waste-free, so I don’t have to go to the washroom.

I lost my hearing ability during that time and had severe breathlessness issues. I could not speak. My body didn’t allow me to speak more than 2 or 3 words. I felt like a dumb sitting in bed with immobile limbs, no hearing ability, and no speaking capacity. My dad used to be with me day and night, giving me baby-like care. 

I was admitted to the emergency thrice for these complications. After recovering physically, I faced cognitive and concentration issues. My mind gave up very quickly, resulting in mental exhaustion and fatigue. It hindered my managing skills, and I lost my focus somewhere. I struggled with brain fog, forgetfulness, and claustrophobia resulting in anger, frustration, and low self-esteem issues. 

I was no more than the same intelligent, attractive personality but struggling with myself, battling my own beliefs. I pity my small younglings who needed their mom, but I was not around. 

All these things happening around created a lot of anger, frustration, and helplessness, which my family endured. The family will always be the most important thing. They are willing to make incredible sacrifices and adjustments because of love. No other force in the world is as powerful and motivating as that of familial bonds. My in-laws supported me wholeheartedly. 

They were always there for my kids. Again, luckily, by God’s grace, medicines worked, and with time and family supporting me in each possible manner, it took almost a year to return to my better self. Even after a year, I was still not the same self as before dengue. But, yes, I was progressing towards recovery.

2020 was a very anxious and unpredictable year. My mental state, already being a little unsound and allying with the capriciousness worldwide, I was terror-struck. I cried in every unexpected situation. The emotional turbulences and mental turmoils disturbed me a lot. 

But I was fortunate enough to have immense family support, which helped me physically to get better and emotionally and psychologically. My husband, the man I married, is the most caring person. He was all over me. And I was getting better. My mother, my pillar of strength, the epitome of calmness and serenity, helped me throughout and to date. 

She has been my source of inspiration and my brunt-bearer too. Again, that was a significant reason for not getting into chronic depression, as is mostly the case with lupus patients, because I was always surrounded by love, peace, and positive vibes. During this time, I realized my kids were growing up, and I was missing out on the little stuff and little things I did for them. So, I started doing those. I was feeling good for them. My family was feeling good for me.

It was just like a calmness before the storm. In early 2021, just when the covid second wave had gone, the Herpes virus/Shingles tormented me hard on my lower abdomen and back. It has been the deadliest pain experience I have ever had till now. It was so bad that it made me forget all my previous sufferings. I was in chronic pain and agony for three months. I can’t even explain how awful it was. 

I had no clue what was happening in the outside world. No painkillers worked. I was yelling and crying out all day and night. I was intensely miserable in a very pathetic condition. I shut my door and stuffed cloth in my mouth, so my cries didn’t reach out to my kids. I used to burst out my anger and helplessness toward my family. But at the end of the day, they were the ones who asked for and cared for my well-being. 

It’s been a year, and I still have herpes pain, unable to wear proper clothes as the skin has become sensitive to touch due to nerve damage. As per the doctors, it’s self-limiting. It will take its own sweet time. 

So, what are the learnings and messages I intend to give? Life is full of ups and downs, crests and troughs, and good and bad times, and we need to deal with that. From cursing God earlier to being grateful to God for what I have. My family, kids, and little world are there with me. Lupus appears to be a tiny thing. 

Let’s be grateful for what we have rather than complaining and blaming all the time. I was never thankful for being a blessed mother until I was admitted to the hospital, where I saw young girls deprived of this valuable gift. Lupus makes childbearing difficult, so doctors told me to thank God a thousand times a day that I had lupus after my kids. 

Motherhood is a compelling gift of nature, and I value and respect it today. We regard Earth as Mother in our ordinary discourse because it gives birth to all life and sustains it. Similarly, motherhood is also a powerful gift, as the continuation of human civilization, values, and morals depends on the next generation being born. Now, I am thankful for being given this sacred duty by God.

I realized that our plans didn’t work according to us. I had the perfect one. My job at 23, my wedding at 26, my first kid at 28, 2nd kid at 30, and lupus at 33 was never a part of my perfect life. So, let’s live for now. Let’s, talk about today. Let’s decide with the moments we have now rather than sulking all the time. 

Things can continually worsen than they are in the present, and we have no idea why. So, let’s be thankful for whatever we have right now. The world is full of unimaginable sorrows and miseries. The whole picture of life is complex and often full of tragedies and miseries. 

I have joined various support groups and group chats where we discuss our problems and symptoms with each other. Sometimes, they are passing through a similar situation as you have been, so you can guide them accordingly, which helps a lot. A practical experience of a lupie is the best description of its existence. 

Getting a diagnosis for a disease that has no cure is disturbing, but with support and advocacy, one can feel that they are not alone. People are suffering like them or even worse. I got a lot of confidence when I found so many fellow lupies in India and worldwide. Unfortunately, the cause of the disease is unknown, so I thought, why not help people manage it. 

Gurbani says, “dhukh dhaaroo Sukh rog bhiaa Jaa Sukh team na hoiee”-it means Suffering is the medicine, and pleasure the disease because where there is pleasure, there is no desire for God.” 

Prayers do miracles, and one should pray regularly, thanking the almighty that we aren’t as unfortunate as some of the people who suffer much more than lupus.

Let’s take the opportunity to remember God when we are suffering, and it will bring us many rewards. My son Mansehaj got the opportunity to participate in the National Roller-Skating competition after winning gold medals at the district and state levels. 

My husband also received an early promotion because of his excellent performance at work, which was somewhat surprising since he was handling pressure on two fronts -me at home, and his work at the office. All this happened while I was suffering on my bed. God works in mysterious ways in bringing rewards to our loved ones and us.

So, here I am signing off. Remember, we are the special ones, God’s favorites, who want to teach us the power of chanting his name. Tough times don’t last. Tough people do. They test our patience and endurance, and we come out stronger with flying colors while they pass away. So, hang in there, have faith.

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