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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.
Isaacs’ Syndrome is not the kind of disease that can be managed alone, and I was subsequently diagnosed with other chronic conditions like Lyme disease, Glaucoma, and Membranous Glomerulonephritis. As I reflect on the years since my diagnosis, I wish to acknowledge my family’s strength and spirit that proved vital to my recovery.
Do we ever wonder who are the people who become so important to us, and for what reason? I tried answering this question as my family is important to me. In most cultures, including ours, being part of a family still means being there during thick and thin without expecting reciprocation. Although it is a fundamental human quality to care for others, caring when times are unusually tough can prove personally challenging. This article is dedicated to all the families and caregivers because of whom rare disease patients like myself can manage their life better.
Some situations in life require more support than others. I consider myself lucky to have a family that became my shielding armour when I most needed them to be. Although I had been staying away from my family for more than a decade prior to my diagnosis of Isaacs’ Syndrome, I was amazed to discover how well my family understood me. I believe our cultural background and pre-existing relationships helped cement my family’s principles, and ultimately made me feel at ease during a troubled time.
I bow to my incomparable mother who, despite being unwell, single-handedly cared for me. She was present throughout, as a support system, right from the time of my diagnosis to various stages of hospitalization. Her day would start before dawn and manage the ayurvedic medicines, never seeming to end. She accompanied me to doctors, cooked customized meals, and spent sleepless nights when I was in pain – the list is endless.
My brother, on the other hand, found ways to cheer me up. He took me to movies, skipped work to spend time with me, accompanied me to different hospitals for various clinical tests, developed the infrastructure conducive to managing medical flare-ups, and was always on a caffeinated alert during emergencies.
My family was the reason I smiled through the toughest moments – at times, I would find a piece of my favourite dark chocolate along with my medicines. My mother would play ludo with me and lose on purpose. They reminded me often to carry my medicines when going out. They would discuss work without really expecting any suggestions from me. At the same time, I could prioritize my interests by discussing topics of my choice.
Though families can create an impact both on our physical and emotional aspects, I clearly felt a huge change in my emotional well-being. They appreciated even the little things I did to keep me going. They encouraged me to write and pursue my hobby, watch cartoons for a laugh, allowed me to cheat a bit on my diet, asked my college buddies to visit, uttered words of affirmation to fill my day with positivity, and involved me in everyday things to make me feel normal and an equal part of the happenings in the family. They patiently listened to my boring talks, assured me they would always be there for me, and uplifted my mood by preparing my favourite foods on days I made extra efforts to walk. They connected with other rare disease patients and their families to form a support system and shared information that benefited immensely during my course of treatment.
Their daily work was so cleverly divided up that I could hardly hint at the unseen efforts. They always stood close to me from diagnosis to treatment. Their suggestions, advice played the center to my health care choices and helped in the decision-making process. I remember a conversation with my doctor when he rightly pointed that family members influence each other, and I should credit them for all their support which has prevented further health deterioration. The bridge of the relationship between my family and the healthcare professionals was strong enough to benefit me with all the care I required. They never showed their vulnerability instead faced the entire situation with vigour. In the process of daily fighting the symptoms I felt how their efforts, love and care added so much of a positive flavour to my good health.
While many healing pieces had to come together for me to recover from my unseeable wounds, the key was my family’s support. Although everyone had to go through unspoken physical, emotional, and psychological stress, we had the opportunity to strengthen our pillars of togetherness and found many moments to smile. Today, I gladly say I survived this health crisis because of my family.
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
