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This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.
What does it mean to live like someone else when one is diagnosed with a rare disease? It is about my experiences living with Isaac Syndrome.
It was challenging for my family to receive a medical report confirming a condition considered rare, that has no cure and can at best only be managed.
Until receiving that report, I was living the life, with an MBA in Finance and investment banking experience of over 13 years. I was a resident of the posh Mumbai suburb of Bandra, and when not at work, home, or hanging out with friends, I would be riding on my favourite roads, playing table tennis, or walking on the beach in the evening.
Never did I imagine that my life will change in no time! When I might have expected to be in the proverbial pink of health, I was diagnosed with a rare medical condition, Isaacs’ Syndrome, accompanied by membranous glomerulonephritis, Lyme disease, and glaucoma. My life instantly changed from ordinary to rare. To me, a rare disease was associated with not much can be done and a list of unanswered questions. I felt like life had ended without giving me time to finish the unfinished. I thought I would not get a second chance to evaluate life’s priorities and my responsibilities towards them. Dealing with stabbing pain and constant twitches throughout the body is not easy. You might guess that these diagnoses altered the course of my life irrevocably, with my identity slowly changing from being a healthy person to becoming a patient. The transition was painful, to say the least.
Did the perception of time change?
When doctors first called me rare, I felt a distortion in my perception of time. Often, I felt the doctors were only pretending to know about my disease. Initially, my symptoms only worsened and every time I tried to regain some sense of normalcy something would pull me down again. As events unfolded, the duration of the indefinite seemed far even from imagination.
Have I accomplished the dreams that I set for myself?
Instead of dwelling on financial portfolios and market graphs, I was busy maintaining medical reports with detailed information on doctors, symptoms, and prescribed medicines. My excitement became confined to getting through my daily routine of eating right, taking medicines on time, and waiting for any improvement in my health.
Have I made room for newer perceptions?
One of the key changes in my thinking was my agreeing with The Spoon Theory, which explores the difference between those with limited energy reserves and those without, in terms of getting through the day. I had inadequate energy for performing my daily tasks. My symptoms resulted in an indefinite trend of starting the day with a healthy breakfast but ending it with a bedridden dinner.
Where will I reach if I keep heading in this direction?
Each day was a new discovery, involving letting go of many unpleasant experiences. I missed my freedom to do things and, instead, I was expected to follow a strict routine:
- Stopped exercising: The moment I tried communicating with normalcy my nerves showed signs of fatigue and I even suffered a complete breakdown.
- Followed a restricted diet: Improved dietary practices can play an important role in decreasing the burden of a rare disease.
- Wore protective clothing: I wore masks even before the onset of the COVID-19 pandemic, as the immunosuppressant medications made my immune system vulnerable.
- Stopped driving: Due to muscles cramping and legs paining, I could no longer ride as I liked to.
- Said no to phone calls; Speaking on the phone became entirely subject to headaches and weakness.
- Reduced social interactions: My social hangouts were limited due to lowered energy levels.
- Wore woolen clothing: Even during summers, I felt cold most of the time and had to dress warmly.
Am I spending enough time with the people I value?
I was seen as being connected with my doctors more than my friends or close family members. I had to monitor my symptoms and had weekly reviews with doctors.
Am I who I wished to become?
It was difficult to understand and agree to the difference between what I should and what I could do. It was sad to say yes to taking help from my elderly parents.
What would I change if I saw the situation through a patient’s eye?
- Typically, patients using assistive medical devices are perceived differently in society, whereas I could not expect people to understand something they were unable to see.
- Hardly any information is available about the disease even through a Google search nor could a common platform be used to share concerns for solutions.
Though change is inevitable, I reminded myself I was not undertaking any overlong joyride and, instead, I was doing something purposeful without losing the zest to recover. I experienced many changes over the course of the disease, from the time of its appearance in my life to its progression to my treatment and then trying to get back to a somewhat normal life.
Did these changes break me as a person? Was I terrified? How did I perceive the situation and become the person I am today? I’ll be back with the answers to these questions in another post.
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.