Autoimmune conditions, Chronic Illness, chronic pain conditions, Hashimoto's disease

The Winning Horse – A Hashi Warrior

You don’t look sick. Stop faking it to gain sympathy!” Even after five years his words haunt me during those lonely nights when life threatens to get overbearing.

*-*-*-*

I started working at the age of 21 and by the time I was 30 I had reached a decent stage in my career or so I liked to believe. Heading a state with a team of 15 to lead was like a dream come true for me. Like all other corporate jobs, investment banking came with its own demands and I loved it to the core… till life gave me a rude wake up call. What started as small ailments turned out to be Hashimoto, an autoimmune disorder where chronic pain was my new companion!

Never having known or heard about this disease, took me a while to get my head around it. “You need to listen to your body now. You have been taking it for granted all these years. Chaotic sleep patterns, haywire eating schedules and working for 12-14 hours a day, what do you think you are? A robot?” My doctor was at his preaching best that morning. With my reports on his desk, he looked concerned. And so was I.

It was just last week that he had announced my diagnosis as suspected case of blood cancer. Today, he was relieved that his fears were found untrue. But at the same time he knew the battle had just began. I could not ignore the warning signs my body was giving out so loudly.

On the other hand I had spent the last week feeling like a pendulum where my feelings oscillated between being glad that finally we had found the problem and feeling scared about what lay ahead for me. Being ill on and off for close to four months now had begun to get on my nerves. I was cranky and needed a closure. Known for my impatient nature I wanted to be done with it. If we have found the problem then let’s talk about the solution. I never believed in harping about the discovery of the problem, in my opinion it was futile. But my doctor proved me wrong. According to him, the solution lay in my problem. I had taken my health for granted way beyond permissible limits and it was high time I paid heed to his advice.

After a while when he noticed I wasn’t reacting to anything that he said, he came out with a game changer. “Why don’t you take a leave for couple of weeks? You need to get used to the medicines and also to the changes your body is undergoing. You are in so much pain and all you have been doing is pop painkillers. I hope you understand how harmful it all is in the long run. Listen to me and take leave. Recuperate well and it will all be fine. Stress is your trigger and you need to bring it down. I would recommend you consider changing your job to less stressful one. It all doesn’t seem to be helping you. Start meditating, join yoga or better work with a therapist who understands this whole thing well. Don’t exert yourself in doing things that might physically drain you. You need to understand that now; you are no longer the same as before. Something in you has changed. ”

Changed! Yes of course. A lot had changed. From someone who was multi-tasking I could barely finish one job right now. From being on my toes all day long, I could barely stand for more than five minutes. All this and much more when I had just won the best employee award 3 months ago and was staring at a double promotion in couple of months with a huge 6 figured bonus waiting for me to stake a claim. No, this wasn’t happening to me. I kept closing my eyes and opening them for while just to be sure this is real. And it was.

The next day when I applied for leave my immediate boss uttered the golden words I used in the beginning of this article adding, “Your performance is failing day by day and this is all you could think of to justify it? You have been making so many mistakes in your work. In last 5 years that you have worked here this is the first time I have seen you be so careless and I am disappointed in you thoroughly.” He was tired with my constant sick leaves in last couple of months and was now forcing me to quit. A part of me wanted him to understand, while a part of me knew it was all futile. He wouldn’t. He couldn’t. He didn’t. I sat staring at him for a full minute before I realized I was about to break down. He was the last person before whom I could cry. I excused myself and rushed to the washroom. Once inside the safe confines I remember breaking down.  Sadly, I didn’t know what I was crying for. Losing a dream, a career or feeling lonely whilst facing what then seemed to be the worst crisis of my life.

A tiny voice inside my mind told me to fight it out. For me at that moment, it was all about making a choice. I had the courage to fight only one battle. It was either the professional one, fighting against this system which had chosen to terminate me unlawfully because I was a non performing asset or fight with the unseen demon residing inside me causing me all the pain. That day, I chose the latter. I picked my bag and walked away with my head held high for I had nothing to be ashamed of.

He wasn’t the first person who didn’t understand my ordeal and he wasn’t the last either. In the coming months I lost friends, whose friendship I could have sworn by. I lost loved ones who felt all I could do was just crib about my imaginary illness which neither of them could see.  Every time I cancelled a social meeting citing health reasons I used to be at the receiving end. Gradually I stopped getting calls, messages or invitations to get-together. In short, I ceased to exist for many of them for I was that little boy who kept crying on the arrival of wolf while no wolf was visible to anyone else.

Was I sad? No, because nothing seemed bigger than the battle I was fighting every single moment. Waking up every day was a surprise. You just didn’t know how your body was going to respond today. Neither the parts that pained were in my control, nor was the degree of pain. What was in my control was how I chose to respond to it. I decided to take the bull by the horns and befriend my enemy, my body. I slowly learnt to understand its language, the signs it gave and its demands.

The initial few months were hell, if I could say so. My doctor had already warned me about it and explained at length the symptoms I would experience. I thank my stars for having found such a wonderful doctor, who was my confidante and guide in every manner. He showed me a path and his only condition was I don’t give up no matter what. And give up I didn’t.

I would wake up in the morning, unable to make a cup of tea for myself. There are days when I can barely stand. Having spent the whole night tossing and turning, some days I can barely think straight. At times holding my mobile phone felt like a punishment. I couldn’t comb my hair or plait it. My pace of typing had gone down drastically. Talking for long was huge task. There was a huge list of do’s and don’ts dominating my food list. Not to forget the various ways my body chose to respond to the medication. Everything and anything was a challenge in itself. The list of things I could actually do was close to zero. It was frustrating and irritating. It seemed as if I was in a dark alley with no way to get out. There was no light at the end of the tunnel visible. Undeterred by it all, I continued striding ahead because quitting was never a choice.

I understood the importance of self-love and I filled every crack, every crevice with it. I never ceased reminding myself how life smiled at you every time you smiled at it. Frown and all you had were frowns. This illness has made me more empathetic and appreciative. In the busy-ness of it all, I had stopped admiring life. I was so busy chasing mirages that I had not seen the beauty of reality I was surrounded with. And now, I stop to smell the flowers at every opportune moment.

In the hindsight, I don’t blame anyone for their actions or reactions. Who wants to put their bets on a losing horse? That’s the rule of the world and that’s how I ideally justify my employer’s behavior.

If there is anything I would like to tell these people then it would be this:

May you or any of your loved ones never have to go through pain to understand joy better.

May you never know what it is to wake up with uncertainty.

May your heartbeats never drown in the chaos of life.

There were nights when I used to cry remembering the humiliation he put me through. But then in the last few years that I have been diagnosed with this I have realized expecting humane behavior from every one is a bit too much. Instead of blaming my friends for ditching me when I needed them the most, I learnt that finding your tribe is important. Even if there are only a handful of people who stand by you in your worst hour, they are your tribe. Instead of being obsessed with perfection, I had finally started celebrating my imperfection. After all, even the word imperfect says I am perfect!


This story is a contribution by Namrata. She is a woman with immense strength and a very strong soul. Her adversities never let her fall down, she gathered herself and took control of the situation. You will be reading more stories by her in future. She is a true inspiration.

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12 thoughts on “The Winning Horse – A Hashi Warrior”

  1. Wow…. really Namrata’s story itself shows how powerful & determined she is to pave her own ways and live with her illness, not complaining about it to anyone. She really is the inspiration to so many patients with invisible illnesses, who are often misunderstood and not believed at all. Wish her well.

    Liked by 1 person

  2. “Who wants to place their bets on a losing horse” this is what I tell myself every time I was fired due to bad health. There are still Flex jobs and ways to contribute especially with Assistive Technology. Unfortunately, the lack of infrastructure makes this difficult. I hope your story creates a more supportive environment for employment for people dealing with health challenges.

    Liked by 1 person

    1. I so agree and I can truly relate to that feeling. I am hoping for things to get better too in every way. In terms of medicine, insurance, care giving and ofcourse employment. Day to day life as it is, is challenging for us and these things add to the woes. Thank you so much for stopping by and leaving your comment.

      Take care.

      Like

  3. “Even imperfect says I am perfect.”
    How I love that line, Namrata! I knew you were having health issues, but I never realized just how debilitating they were. Yes, it’s so difficult for others to see and acknowledge our pain when, on the outside, we look as if nothing has changed. My prayer for you is that you continue to heal and find a healthy balance of wellness.
    Blessings, my friend!

    Liked by 1 person

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