From Darkness to Light: A Story of Autoimmune Resilience​

My words, my journey – 1st Inning

From Darkness to Light

Hi, I am Jaitrali Jhanjharya.

Let me start by saying that there is a disorder which has no cause and no cure, called Autoimmune. There are 80 plus disorders falling under this category.

My dear friends, I stand before you today to share my journey – a journey that has been filled with challenges, but also with immense courage, resilience, and an unwavering spirit.

It all began years ago, in 2004, when an inexplicable numbness started to creep into my body. Like shadows cast upon my soul, this strange sensation made its presence known. But just as quickly as it appeared, it faded away, leaving me bewildered by its fleeting nature.

Then, in 2006, the symptoms returned, unrelentingly. Numbness began to crawl upwards, instilling fear in the depths of my being. Desperate for answers, I sought solace in the arms of various orthopaedic specialists, only to find that all tests came back clear. The elusive diagnosis remained just beyond my grasp.

Determined not to let uncertainty define my journey, I embarked on a quest to find the truth. Seeking the guidance of a neurologist, I found myself handed a prescription accompanied by the word “probable autoimmune.” It was a cryptic clue, a mere hint at the underlying cause of my suffering. Confusion engulfed me as I grappled with the question, “What is autoimmune?”

Time continued to pass, with fleeting moments of respite, until 2009 arrived, shrouded in a darkness that threatened to consume me. The numbness intensified, accompanied by loss of balance that shook me to my core. Helplessness wrapped its suffocating tendrils around me as I searched for a cure.

Returning once again to the orthopaedic realm, I yearned for solace and understanding. While tests continued to come back clear, the empathy of one particular doctor warmed my weary heart. It was through his suggestion of an MRI that the hidden truths of my condition were finally unveiled – dark, haunting plaques scattered across my brain and spine, as multiple sclerosis attacked with an unyielding fury.

With this revelation came the desperate need for hospitalization, and treatment began in earnest. Solumedral IV became my lifeline, pumping hope and strength into my veins. Within a mere seven days, I gained nine kilograms, a physical transformation that both astounded and alarmed me.

The doctors urged me to leave my job, to succumb to the limitations of my illnesses and rest. But deep within the core of my being, I knew that giving up was not an option. I refused to be defined by my afflictions. Instead, I stood tall, determined to accomplish great things that would not only inspire others but set my own spirit free.

And so, I did just that. I stood, among the ranks of the “Top 10 Most Powerful Digital Women,” a beacon of strength and boldness. I was also recognized as one of the “Top 20 International Digital Marketers,” defying the odds and proving that my strength could not be quelled.

Today, I share my story with you, with unwavering conviction and a heart full of pride. I am a warrior, fighting battles within my own body, embracing the challenges that life has thrown my way. Multiple sclerosis and Crohn’s disease may try to bring me down, but I will not falter. I will rise above, wearing my crown of victory.

With every step I take, with every obstacle I conquer, I continue along my journey, guided by hope. In the face of adversity, I find solace and drive. My spirit remains unyielding, ready to seize the opportunities that lie before me.

So, my dear friends, let my story serve as a testament to the power of the human spirit. May it ignite a fire within your hearts, unwavering and fierce. And in your own journeys, may you find the strength to rise above, to conquer, and to thrive.

My journey with multiple sclerosis and Crohn’s disease has been a tumultuous one, filled with moments of despair, but also moments of triumph. In the face of uncertainty, I have refused to surrender to the limitations that others have imposed upon me.

When I was diagnosed with MS, it felt like the ground beneath me had crumbled. Hospitalization became a necessity, and the treatment I received through Solumedral IV brought both relief and physical transformation. But fate was not content with one affliction. As I grappled with understanding MS, another enigma presented itself – seventeen times a day, I found myself running to the bathroom, each visit a reminder of the torment inflicted by Crohn’s.

The doctors, focused on my MS, dismissed the severity of my digestive symptoms. Refusing to accept their incomplete truth, I pushed them to unravel the mysteries of my body. Finally, an endoscopy revealed the presence of Crohn’s disease, a reality that both laughter and sorrow embraced within me. Two autoimmune disorders, intertwined within my being, challenging me in unimaginable ways.

They told me to give up, to resign myself to a life of rest. But that was not who I was. I worked tirelessly, defying their limited notions and carving a path of success in the digital world. Being recognized as one of the “Top 10 Most Powerful Digital Women” and as one of the “Top 20 International Digital Marketers” was not only a personal triumph but a testament to my resilience and determination.

Through the depths of pain and the weight of despair, I have discovered that love and passion provide the fuel to defy life’s unfair share. MS and Crohn’s may challenge and consume, but they do not define me. I am defined by my strength, by my unwavering belief in the power of the human spirit.

In the darkness of my circumstances, a glimmer of hope appeared in the form of CCSVI, an experimental treatment that held the promise of a potential solution. We embarked on this journey, filled with uncertainty but fueled by the desire for relief. Despite the procedure’s failure, and the subsequent lack of awareness among Indian doctors, I remain determined to find assistance and relief from the relentless grip of these diseases.

Sadly, the medical world often fails to fully understand the complexities and nuances of invisible illnesses like MS and the effects they have on mental health. I have found myself trapped in a web of misdiagnoses and ineffective treatments, labeled as depressed when my symptoms don’t fit these narrow definitions. The medication, the weight gain, and the side effects have only further burdened me on this already treacherous path.

But I refuse to let their limited understanding define me. I am more than what they see. I am a warrior, fighting an unceasing battle every day. I refuse to let the weight of depression and the stigma it carries crush my spirit. I seek answers and affirmation, refusing to accept a diagnosis that doesn’t align with my reality.

It is through fourteen years of trials and tribulations that I have discovered the power of self. No one knows our bodies better than we do. We must question, seek rationale, and defy when needed. It is in breaking through the barriers and challenging the status quo that we find our true strength.

So, my friends, let my journey serve as a reminder that we are not defined by our illnesses. We are defined by our unwavering spirit, our resilience, and our determination to forge ahead despite the obstacles that lie in our path. Together, let us break the shackles of limitation and embrace the power within us to rise above.

BUT…With unwavering spirit, I rise, unstoppable, unyielding,Through the darkest days, my will, unrelenting and appealing. In this battle between disease and resolve, I stand tall,Writing my story, refusing to let despair befall.

2nd Innings

After I had to give up on my journey as a digital professional, I grappled with what next. While I yet craved to go back to work I knew people don’t understand autoimmune and I suddenly become obsolete and incompetent. The word hounded me for good year and a half and I realised I cannot fall a prey to this and play a victim. I prepared my mind to WHAT NEXT in the given and to prove those wrong who left me with a stigma in my head, the word incompetent when I filed a case against them for non payment for my services for 15 months.

I took baby steps as and when things occurred to me. My first step was to build a group on Facebook called Autoimmune a silent Killer. The reason behind was that most of our symptoms are invisible and not visible to others. The pain we go through the anxiety attacks we have the fatigue we feel, the mood swings we have how we suddenly get cut off as a part of the normal people and FAMILY TOO. Many people are abandoned by their own families.

I started writing article and advocating on different places that dealt with autoimmune disorders like MSIF (Multiple Sclerosis International Federation).

While at it I realised that most people from India are not open to share or talk openly, on the contrary the international communities and the effected ones spoke about it and openly discuss on any open forum. Many Indian came to me talking to me directly on DM but not on the group. Here was when I took an U turn. I took up this cause and not only MS and Crohn’s but the entire autoimmune family. The thought dawned upon me that counselling could be a good option. Initially I did my course in counselling for myself to heal me and move ahead, but as i did the course I kept moving on with it, little that I knew this would become a passion and a purpose in my life heal others who have been suffering silently or not educated enough on this subject.

Here’s where my second journey started. As I went on I did multiple skills to add to my education and once again I stood up as a beginner.

Having said so, I would not have been able to do any of this without the support and help I needed from my family. My Husband and my two kids stood rock solid by me encouraging me in every possible way, I felt they had grown before their age but for the good. They have become compassionate individuals and in this 15 years my husband has never let me down or not supported me, may it be mentally, physically, emotionally and financially.

There were many road blocks and after I had to quit my job at the peak of my career, as a CMO where my money was not paid for 15 months as the corporates don’t understand autoimmune disorders and how mentally it can damage a sane mind, it was a shock to me when I asked for my dues and I was yet not paid the mental harassment made me take to the wheel chair. I wanted to sue them for non payment and mental harassment but did not have the mental bandwidth to fight those devils. Till date, I am not interested in the money but punish them for the act. Slowly I also deteriorated with memory loss anxiety attacks breathlessness throwing up blood with my food pipe bursting, the agony that hounded me and kept mind clouded.

Everytime I went to the hospital I thought what more can happen but BINGO something amazing was always there in store for me. Last September, I woke up and could not feel my legs. I tried to put them down and I fell. I felt nothing below my knees as if someone has cut my knees off and there was nothing. I was once again admitted and this time it was partial paralysis. I lost my bladder control movement of my legs and was only confined to the bed and in one room. But for me I changed the word “Impossible” to ” I am possible”. I went on with my life without expressing the jolt that I just had gone through.

I kept seeing clients and am still doing so taking one day at a time making this my mission my Mantra in life that it’s easy to give up but difficult to move on, I did choose the difficult path but today I am happy to reach out to people, encourage them be it autoimmune or just mental health issues. Life moves on only if you want to.

Today like me many are suffering but I want to spread this awareness to all please come out and talk, you are not alone. We make a family a family that’s far superior with the problems that we deal with. Life does not end with your diagnosis life can move on only if allow it to.

So my friends open the doors to let the healing come your way. It’s not the end, it’s just the beginning.

If you’d like to know more or seek answers, please feel free to reach out to me

Courtesy:

www.wonderwomanwedbesday.com

To publish this story