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Every once in a while, life hands us a challenge that rewrites the very rhythm of our days. For me, that challenge came in the form of an unexpected diagnosis—and a cascade of others that followed. But amid it all, I’ve found something extraordinary: the quiet power of social connections, the kind of gratitude that reaches beyond words.
So today, I say—thank you, dear Universe. For the healing, for the resilience, and for the people who stayed.
Living with Rare Illness: A Journey of Complexity
India is home to approximately 70 million rare disease patients. It is a staggering number that carries millions of deeply personal stories. Most of us lived rich and meaningful lives long before our diagnoses. But that transition from health to diagnosis and beyond can be a minefield of emotional and physical upheaval.
In my case, it started with Isaacs’ Syndrome. It is a rare neuromuscular condition marked by continuous muscle activity and hyperexcitability. That alone was life-altering, but it was just the beginning. I later discovered I also had Lyme disease. It is a bacterial infection transmitted through tick bites.
The surprises didn’t end there.
Glaucoma affected my optic nerves. Membranous Glomerulonephritis is a progressive kidney disease.
A cocktail of complications followed Irritable Bowel Syndrome (IBS), Diabetes, Frozen Shoulder, Eczema, and Blood Pressure issues.
My body had turned into a battlefield.
The Emotional Landscape: Friends, Silence, and Support
As my health spiraled, so did my social life. People
I’d trusted and leaned on it, but it slowly began fading out of sight. A few disappeared without warning. At first, I didn’t notice. Self-care took priority. But eventually, the silence spoke louder than words.
Losing friends during illness isn’t uncommon—it’s heartbreakingly practical. When life changes overnight, some relationships can’t adapt. And that reality, though painful, was one I had to accept.
Yet, from that loss bloomed something priceless: the emergence of true companions. The life buddies. The ones who stayed.
The Friends Who Stayed: What Made Them Different?
These friends weren’t just present, they were pillars of understanding and action. Here’s why they mattered so much:
They Were Informed and Resourceful
Whether it was a new treatment or a strange symptom, they researched tirelessly. With ease, they’d dig up insights that took me hours to find. Their curiosity and effort made me feel seen.
They Listened Deeply
Conversations were never draining. They were rejuvenating. We navigated everything from philosophy to pop culture, and they often proved wiser. They offered great ideas, comfort, and a safe space to vent.
We Shared Common Interests
Despite our different paths, we were united by shared passions. Gaming, reading, or just musing over life, they never shied away from tough conversations.
They Respected My Space
They understood that healing needed solitude. They never pushed, never intruded too much, and stayed close enough so I never felt alone.
They Played Sports with Me
Strangely, sports became a salve.
One of my friends introduced me to sports medicine, giving me hope that movement wasn’t off-limits. Our bonding through play wasn’t just therapeutic—it became joyful over time.
They Were Non-Judgmental
Friendship, after all, is a voluntary bond. It is not driven by obligation but mutual influence.
With them, I could speak without filters. Their honesty motivated me to grow, as they weren’t afraid to challenge me.
They Were Inspiring
Even their silence held encouragement. Their presence reminded me of my strength. Sometimes, just hearing, “You did your best,” was enough to lift me out of despair.
We Laughed Without Reason
There were moments of pure, inexplicable joy. Laughter over old memes, past stories, or just bad jokes became snapshots of grace in hard times.
It wasn’t about healing, it was about living.
The Two-Way Street of Friendship
I intentionally reached out to them by initiating conversations and sharing. I asked the right questions. I listened as much as I spoke. Even when things felt chaotic, I made space for their voices.
Communication Is Everything
We’re not mind readers. And that’s okay. What matters is expressing, authentically, bravely, and completely. When you’re sick, communication becomes even more crucial.
The best advice I ever got?
“Focus on the present, not the future.” That shift in mindset helped me cope. When nothing worked—medicines failed, doctors were confused, treatments went nowhere—I had one anchor: the now.
Yes, I struggled. Pain, both physical and emotional, was overwhelming. My identity felt altered before I could even grasp what was happening. But my friends reminded me: deal with what’s in front of you. One moment at a time.
Footprints and Connections
People come and go. Some leave behind strong imprints.
That’s the beauty of shared stories—we gravitate toward those who’ve walked their rough paths and emerged kinder.
In times of hardship, you can retreat into a shell. Or you can choose to be vulnerable, to ask for help, and to give people the chance to show up for you.
In my case, those who did, they were the strong ones. The ones who didn’t flinch. The ones who stayed.
So, what does your experience say about friendship?
DISCLAIMER
These reflections are deeply personal and not intended as medical advice. Always consult a healthcare professional for any health concerns.