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This blog is another opportunity to feel grateful. Thank you, Universe, for continuing to bless me with recovery and health.
Do you have your favorite success or failure story? My past claws its way and leaves me in awe of, Who I am. And how, will this story end?
Today, I credit my health success to a setback that changed my life forever and inspired me to keep moving.
It sounds quite simple in the face of success but if I zoom in, the journey was very challenging.
In 2016, I was diagnosed with a rare disease called Isaacs’ Syndrome. Isaacs’ is a neuromuscular health condition that stems from muscle hyperactivity. In the process, I also discovered that I had Lyme disease. Lyme is a bacterial illness that gets transmitted through ticks.
Glaucoma also accompanied me. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease. I faced tremendous issues with my gut, stomach acid, and digestive enzymes. I also developed Irritable Bowel Syndrome (IBS), Diabetes, and Blood Pressure.
Typically, the idea of success is often measured by societal standards. With rare and chronic health symptoms, the actual word definition of ‘success‘ changes. It’s no longer how it’s commonly used. Nor it’s only about setting and achieving financial goals. Instead, it’s about smaller victories. Success becomes extremely personal.
Certain life experiences lead to an individualized understanding of what it means to succeed.
The Initial Shock of Getting Diagnosed and Its Impact
The transformation began almost 10 years back with my diagnostic odyssey.
It started with a routine check-up on a frigid overcast afternoon in 2014 when I had a high fever. I had always been diligent about anything related to my health. But the news that broke out wasn’t that routine, and I was diagnosed with a rare disease, Isaacs’ Syndrome.
I remember those precise moments, peeking into the hospital alley in a wheelchair. Suddenly, I felt like a stranger in my own body surrounded by boundaries of rules, challenges, and perspectives.
With time, the health condition progressed in stages. And then, every little thing mattered, even a mild shoulder pain. There was so much happening, the situation made me question every twinge in my body. The episode followed countless symptoms and necessary investigations.
I was faced with the reality that Isaacs’ is a progressive disease that I might live with for the rest of my life. I was immediately put on heavy doses of medicines including painkillers, muscle relaxants, immunosuppressants, steroids, etc.
Though the outside world never noticed, my life changed that day, forever. It was not something I ever imagined until all of it became a reality.
This period was full of adjustments that forced me to re-evaluate my priorities. With time I got a deeper understanding of what truly matters.
The Shift in Perspective
Imagine a corporate executive, whose life is full of meetings, and deadlines. For such, success is quantified by bonuses, promotions, and professional recognition. They get motivated by closing deals and the prestige of their title.
As I grew older, I was no different and became a by-product of my environment.
My perspective taught me to be on the periphery of being self-centered proving myself on a day-to-day basis. My meaning of success was a synonym for financial soundness.
Weekends were packed with networking opportunities where the key was on expanding professional circles that could boost career. Meet friends at trendy restaurants and talk about work accomplishments and promotions.
Then, one day, I received a diagnosis of a rare and chronic disease. Suddenly, the things that once defined my success seemed quite distant.
My new reality redefined, success.
The energy that was once focused on work instantly shifted to managing health. It was even a success if I sat at a stretch or walked without help. Plans revolve around preserving energy and health. Now I prefer quieter settings and find success in a day without pain or fatigue. There is so much joy in finishing simple tasks.
There’s a clear gap.
This shift in perspective brought a deeper appreciation for life’s simple pleasures. I found joy and valued self-care, moments of peace, and genuine connections.
The diagnoses, while challenging, yet enriched my life with a more profound understanding of what true success means.
Embracing the New Definition of Success
Success was never as straight as an arrow for me. My journey was filled with ups and downs.
Embracing a new face of success after a rare diagnosis involved taking steps that helped shift from the conventional meaning of success to a personal approach.
1) Accepting my situation
First things first.
It was the core part of my success in acknowledging the new reality. It was about coming to terms with my diagnosis and its implications.
2) Reflecting on what truly mattered
The recovery phase was also an opportunity to maneuver over what truly mattered.
I identified and focused on things that brought joy. Activities like writing, meditation, and walking in the greens were fulfilling.
3) Setting new goals
It is vital to set and work on new goals.
It kept me moving forward and aligned me with my evolving vision.
4) Self-care
It ensured the mental, emotional, and physical well-being, productivity, and creativity needed for success.
5) Building support
It created the foundation that gave me encouragement, information, resources, and accountability.
6) Celebrating small wins
It provided the much-needed motivation and building momentum.
It ensured that I was moving in the right direction. Incorporating it into my routine gave me a positive mindset and was one of the most useful stress-reduction tools.
7) Engaging in meaningful activities
It guaranteed depth and purpose beyond mere achievements.
Before diagnosis, I was quite engrossed in my career. My condition forced me to slow down and reassess life. In this newfound space, I rediscovered my likings. I became an advocate for rare disease awareness, founding a website, ordinarilyrare.com to support research and connect patients with resources.
It provided me with a therapeutic outlet and a renewed sense of success.
After diagnosis, the relentless pace I was accustomed to was unsustainable. Initially, I felt lost and overwhelmed by my new reality, quite confused about how to proceed.
However, introducing the mentioned aspects of life aligned with my well-being led to a fulfilling state of mind even in the face of adversity.
Therefore, it can be transformative to reflect on your definition of success.
At times, it’s important to pause and consider what truly brings joy. The definition of success isn’t a one-size-fits-all concept.
Conclusion
Success is a multifaceted concept and is a deeply personal journey.
We experience many twists and turns, be it health challenges, or personal discoveries.
I realized that it’s not just about achieving external milestones but finding what truly matters.
Embrace your journey, and let your experiences shape a definition of success.
So, what’s your definition of success? Is it the material world, good health, wealth, and accolades? Or is it tranquility, good karma, contentment, fulfilment, spiritual growth, liberation, or something else?
Both the above definitions are time-bound. They lend themselves to defining a goal and identifying steps towards its attainment, no matter how small or big they may seem.
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
