What to Do When There is No Support for the Fear That Follows You Home From the Doctor’s Office
Melissa R. Williams, RN, MSN, is a Board Certified Nurse Life Coach with nearly three decades of healthcare experience and advanced nursing degrees. She specialized in coaching patients with MacTel, a rare eye disease, as well as individuals navigating life transitions, leveraging her clinical expertise and personal experience as a patient.
Macular Telangiectasia Type 2 (MacTel) is a rare, progressive retinal disease that affects the macula, the part of the retina responsible for detailed central vision. Researchers describe it as a neurodegenerative condition that can affect reading, recognizing faces, driving, and other activities that depend on sharp central vision. As the disease progresses, its impact often extends far beyond what can be measured on an eye chart.[1]
I still remember receiving my diagnosis. Not because someone sat down and carefully explained what life might look like moving forward. Not because I was handed a roadmap for the future. I remember because the word MacTel was written on a Post-it note. That was it. A rare retinal disease had just entered my life, and I walked out carrying far more questions than answers.
What is MacTel? Will I lose my ability to drive? Will I still be able to work? What does this mean for my future? Who can help me understand what’s about to happen?
As I would later discover, those questions were not unique to me. They are the same questions countless people ask after receiving a diagnosis of MacTel. What surprised me most wasn’t the diagnosis itself. It was realizing that nobody seemed prepared to help me navigate the life that came after it.
The questions that follow you home
When most people think about a medical appointment, they imagine receiving information, making a plan, and moving forward. What often goes unrecognized is what happens after the appointment ends: the drive home, the sleepless nights, the conversations with family, and the quiet moments when your mind starts imagining every possible future.
As a nurse with nearly 30 years of experience, I thought I understood healthcare. I spent years caring for critically ill children in pediatric intensive care and as a neonatal and pediatric flight nurse. Later, I spent 14 years in nursing leadership within a tertiary healthcare system, including 10 years leading a high-volume pediatric infusion center. I worked extensively with complex therapies, insurance authorizations, and patient and family navigation.
I knew healthcare. Or at least I thought I did. Then I became the patient. Suddenly, I found myself asking questions that had very little to do with retinal anatomy.
Would I still be able to travel independently? Would I be able to be a nurse? How would this affect my relationships? How would I adapt if my vision changed? How was I supposed to plan for a future that suddenly felt uncertain?
These weren’t medical questions. They were life questions.
Progressive vision loss creates a unique kind of grief
Most people associate grief with the loss of a loved one. But grief can also emerge when we lose certainty, when we lose assumptions, and when the future we imagined no longer feels guaranteed.
One of the hardest parts of living with progressive vision loss is that you often find yourself grieving things that haven’t happened yet. You grieve possibilities. You grieve expectations. You grieve the version of your future that once felt certain.
I remember arriving at an appointment armed with research and questions about the clinical trial that eventually led to the FDA-approved treatment option available today. I was told my disease wasn’t “bad enough” to qualify. I understood what the physician meant clinically. Emotionally, however, it was confusing. How could my vision not be bad enough when it already felt life-changing to me?
Then came the realization that approval of a treatment could be years away. Go home. Wait. Watch. Hope. Try not to think about what might happen in the meantime.
The emotional burden of progressive disease often lives in that waiting. And very few people talk about it.
Your diagnosis affects more than your eyesight
Over time, I realized the problem wasn’t that doctors weren’t providing information. Most retina specialists are highly skilled professionals who work diligently to diagnose, monitor, and treat disease. Mine was no exception; he was excellent at this.
The problem was that many of the questions keeping me awake at night weren’t medical questions at all. I wasn’t lying awake wondering about retinal scans. I was wondering whether I would continue driving, whether I would recognize faces across a room, whether I would need to change how I worked, whether my family would understand what I was experiencing, and whether the future I had planned was still available to me.
Those are quality-of-life questions. They deserve space in the exam room too.
The resource I wish I’d been given
As I connected with more people living with MacTel, I discovered that many of us shared a surprisingly similar experience. Some were handed a diagnosis written on a note. Others found it typed at the top of their paperwork. Many went home and immediately started searching the internet because they didn’t know where else to turn.
We left with information. But we didn’t leave with a roadmap.
That realization motivated me to create resources that address the questions patients are often reluctant to ask or don’t realize they can ask: questions about driving, work, relationships, emotional well-being, and planning for the future. Because your diagnosis affects more than your eyesight.
The first resource I created was Your Voice, Your Vision: A MacTel Patient’s Checklist for Appointments, Advocacy & Daily Life, a practical guide designed to help patients discuss quality-of-life concerns alongside medical concerns, prepare meaningful questions, and advocate for themselves during appointments.
The second was A Grounded Horizon, a group coaching experience that brings individuals living with MacTel together in small “communities” to clarify what matters most, adapt to changing circumstances, and create a meaningful path forward despite uncertainty.
In many ways, these are the resources I wish someone had handed me on the day I was diagnosed. Not because they would have removed the uncertainty, but because they would have reminded me that my questions about work, relationships, purpose, independence, and hope mattered too.
What MacTel ultimately taught me
Looking back, I realize I spent a tremendous amount of energy worrying about a future that hadn’t happened yet. I was trying to solve problems I didn’t yet have. I was imagining losses that hadn’t occurred. I was unintentionally giving away parts of my present while worrying about my future.
Eventually, I began asking a different question. Not: “What will happen to me?” But: “How do I want to live now?”
That shift changed everything. Because resilience isn’t about pretending you’re not afraid. It isn’t about denying uncertainty. It’s about choosing how to live despite uncertainty.
MacTel may influence how I see. It may require adaptation. It may change some of my plans. But it does not get to determine what gives my life meaning.
Your life is happening now
If there is one message I wish every newly diagnosed patient could hear, it is this: You do not need to know exactly what comes next to start living intentionally today. You do not have to wait until MacTel takes something from you before deciding what you want to hold onto. You do not have to solve every possible future problem today.
Progressive vision loss can consume your attention with thoughts about tomorrow. But don’t let it steal today.
Your life isn’t waiting somewhere on the other side of this diagnosis. It isn’t waiting on your next appointment. It isn’t waiting on your next scan. It isn’t waiting until uncertainty disappears. Your life is happening now.
While none of us can fully control what happens next, we can decide how we want to live the chapters that follow. MacTel may change your eyesight. It may change parts of your story. But it does not determine your worth, your purpose, your relationships, or your future.
I wasn’t handed a roadmap. I was handed a diagnosis. The years that followed taught me that while MacTel may change your eyesight, it does not determine your purpose, your relationships, or how you choose to live the chapters that follow.
Your diagnosis is part of your story. It is not the entire story. No matter what comes next, you still get to decide how you want to live the chapters that follow.
Free resources
Your Voice, Your Vision: A MacTel Patient’s Checklist for Appointments, Advocacy & Daily Life
A practical guide to help patients prepare for appointments, ask meaningful questions, advocate for themselves, and address quality-of-life concerns that are often overlooked. Download the guide here.
Newly diagnosed with MacTel? Start here.
If you’ve recently been diagnosed with MacTel, this free resource provides reliable information about the condition, treatment options, and questions you may want to discuss with your eye-care team. It also includes an invitation to a complimentary coaching conversation where you can explore the emotional, practical, and quality-of-life concerns that often go unaddressed after diagnosis.
Lisit Point of Light Life Coaching: pointoflightcoaching.com
A Grounded Horizon
A group coaching experience for people living with MacTel who are ready to move beyond uncertainty and intentionally create their next chapter.
MacTel may change your story. A Grounded Horizon helps you decide how you want to live the chapters that follow by identifying what matters most, adapting to changing circumstances, and building a meaningful life now, not someday.
Learn more about A Grounded Horizon.
Read more from Melissa R. Williams
Melissa R. Williams, Registered Nurse, Certified Nurse Life Coach & Founder of Point of Light Life Coaching
Melissa R. Williams, RN, MSN, is a Board Certified Nurse Life Coach, patient advocate, and founder of Point of Light Life Coaching. Drawing on nearly 30 years of healthcare experience and her lived experience with MacTel, she is passionate about helping individuals navigate life beyond diagnosis with hope, resilience, and purpose.
References:
[1] Charbel Issa P, Gillies MC, Chew EY, et al. Macular Telangiectasia Type 2: A Comprehensive Review. Progress in Retinal and Eye Research. 2022.
[2] Peto T, Heeren T, et al. Visual Function in Macular Telangiectasia Type 2. Investigative Ophthalmology & Visual Science. 2016.
[3] U.S. Food and Drug Administration. ENCELTO® (revakinagene taroretcel-lwey) Prescribing Information. 2025.
