Read time 5 minutes
Archith’s Note:
We all have our own version of the COVID story. For me, as a patient with Isaacs’ Syndrome, the pandemic was a test of endurance and a surprising teacher.
This blog is about the silver linings that a rare disease patient, Ebony, found in the midst of uncertainty. She innovatively learned lessons that continue to shape her life today and chose to share them with us.
Ebony About Embracing Change as a Rare Disease Patient
Maya Angelou once said, “If you don’t like something, change it. If you can’t change it, change your attitude. Don’t complain.”
These words became my anchor during the COVID‑19 pandemic. The world was suddenly thrown into chaos. There were fear, isolation, and uncertainty that became daily companions. Yet, in the middle of this storm, I discovered unexpected lessons and silver linings.
This is my story of how a global crisis, despite its pain, brought hidden gifts…
COVID was undeniably harsh, but it also reshaped my journey with illness, resilience, and gratitude. I suffer with Acromegaly. It is a rare disease that affects the body in complex and often unpredictable ways.
When the pandemic struck, my health felt more fragile than ever. Every outing, every interaction carried risk. For someone already managing a rare condition, COVID was like a second shadow. My family and I had to adapt quickly with stricter hygiene, limited travel, and a willingness to face challenges that once felt unimaginable.
It wasn’t just about masks and sanitizers. It was about re‑learning how to live. I had to accept that my routines would change, that my independence would shrink, and that my vulnerabilities would be more visible. At first, this felt like a loss. But slowly, I realized it was also an invitation to grow stronger, to become more flexible, not to resist, but flow along.
My Lesson: Change is not my enemy. Sometimes, it is the very thing that kept me alive.
Telemedicine and a Stronger Healthcare System
Before COVID, telemedicine felt like a luxury, something reserved for a few. Video consultations with doctors were rare, and doorstep delivery of medicines was almost unheard of. But during the pandemic, these became lifelines.
Suddenly…
- I could consult my doctors without the exhausting and risky commute.
- Prescriptions arrived at my doorstep.
- Health insurance providers expanded their coverage.
- Awareness about rare diseases grew as the healthcare system scrambled to adapt.
Digital healthcare wasn’t just convenient, it was empowering. For patients like me, it meant fewer missed appointments, quicker access to care, and a sense of safety in uncertain times.
My Lesson: Technology helped and bridged my gap between vulnerability and care.
Work-from-Home: A Lifeline for Chronic Illness Patients
For years, I struggled with the professional limitations that came with my condition. Commuting was draining, office environments were not always accommodating, and flexibility was rare.
Then came COVID, and suddenly…
- The world discovered what patients had been asking for all along: work-from-home is possible, practical, and productive.
- Remote work reduced my stress. It gave me flexibility and allowed me to contribute without compromising my health.
It wasn’t just about convenience; it was about dignity. It meant I could be both a patient and a professional, without one identity erasing the other.
My Lesson: At work, creating an environment where everyone feels valued is important. It encourages employees without having to hide who they are. It isn’t charity it’s common sense in action.
A More Mindful Younger Generation
One of the most inspiring changes I noticed was among the youth. Many began to live more mindfully, slowing down, embracing creativity, and valuing health.
I met young people who were eager to help, more aware of wellness, and committed to living with purpose. They spoke openly about mental health, experimented with art and music, and sought meaning in small, everyday joys.
This shift gave me hope. If the next generation can carry forward this awareness, perhaps the future will be kinder to patients like me.
My Lesson: Awareness is contagious and when it spreads, it heals people and communities.
Practicing Gratitude and Mind-Body Healing
COVID stripped life down to essentials.
Suddenly…
- I found myself deeply grateful for things I once overlooked, family, food, freedom, even the simple act of breathing without fear.
I began practicing gratitude intentionally. Each morning, I listed three things I was thankful for. Some days it was as simple as a warm meal or a phone call from a friend. Other days, it was the strength to get out of bed.
Alongside gratitude, I turned to mind-body practices like guided meditation and visualization. These helped me accept my body as it is, rather than constantly fighting it. They reminded me that healing is not always about cure, it is about peace.
My Lesson: Practicing gratitude didn’t erase my pain, but it transformed how I carried it.
Rediscovering Relationships and Family Bonds
The pandemic reminded me that nothing lasts forever. Losses were painful, but they also deepened my appreciation for relationships.
- Shared meals became sacred.
- Conversations became longer.
- Even silence with loved ones felt comforting.
- My family and I found new ways to bond through cooking, storytelling, and simply being present for one another.
And yes, I rediscovered the magic of my mom’s food. With restaurants closed, home-cooked meals became the norm. Fresh, healthy, and made with love, they nourished not just my body, but my spirit.
My Lesson: In the end, it is relationships, not routines that sustains me.
Remote Work as a New Normal for Patients
When I had to quit my job due to worsening symptoms, remote work wasn’t widely accepted. Only a few industries, like IT, offered it. But post-COVID, companies began to embrace flexibility.
This shift opened doors that once seemed permanently closed.
- Patients like me could now re-enter the workforce, contribute meaningfully, and balance health with ambition.
It was a reminder that progress often comes from necessity. What was once seen as impossible became the new normal.
My Lesson: Accessibility to things benefits everyone not just patients.
Closing Thoughts: Lessons from COVID for Rare Disease Patients
The pandemic was a teacher, and its lessons will stay with me for life.
It was undeniably harsh. It brought fear, loss, and disruption. But it also reshaped healthcare, work culture, and personal priorities.
For me, it brought:
- Better healthcare access through telemedicine
- Flexible work opportunities that honored my health
- Stronger family bonds and rediscovered traditions
- A renewed sense of gratitude and mindfulness
- Hope in the awareness of the younger generation
As a patient with a rare disease, I know challenges will continue. But I also know that resilience is not about avoiding storms, it’s about learning to dance in the rain.
DISCLAIMER
The views expressed here are personal reflections and not medical advice.