Why Vision Loss can be So Difficult to Grieve

Grief is a deeply personal journey, and as I discussed in my previous blog post, the grief that accompanies disability presents its own unique challenges. Today, I want to delve deeper into why grieving vision loss—a reality I share with many of my clients—can be particularly complex and demanding.

Let me begin by revisiting a fundamental truth: grief isn’t a problem in need of a solution, but rather a natural, necessary response to loss. When we lose someone we love, our communities typically rally around us. We gather to share tears and laughter, to participate in rituals, to remember, and to simply be present with one another. This collective experience provides a crucial foundation of support as we navigate our loss. The shared understanding and acknowledgment of our grief helps support and stabilize us through the most precarious moments.

But what happens when the loss we’re grieving is our vision? This loss can feel uniquely intimate—it’s the diminishment of our own bodily capacity, something so fundamental to our daily existence that its absence transforms every aspect of our lives. Like death, a diagnosis of blindness or vision loss often carries a sense of permanence that can feel overwhelming. Yet despite the magnitude of this loss, the support systems that typically activate during times of grief can be harder to access. Here’s why.

Consider this striking statistic from the Health Policy Institute of Georgetown University: only about 6% of Americans under 65 experience any form of blindness. This rarity creates our first significant barrier to healthy grieving—most people in our support network have never experienced what we’re going through. While they may genuinely want to understand and offer comfort, they must rely on imagination rather than personal experience. This creates an invisible but palpable emotional divide, often leaving us to process our most profound feelings in solitude.

Then there’s the challenge of articulation. Vision loss isn’t just emotionally complex—it’s literally difficult to describe. Unlike the binary nature of sight that many imagine, vision loss manifests differently for each person, even among those sharing the same diagnosis. It’s not as simple as a light switch being turned off. Instead, it’s a dynamic experience influenced by countless variables: lighting conditions, visual field variations, changes in depth and color perception, and numerous other factors. The energy required to accurately convey this experience to others—energy that’s already depleted by grief—can make meaningful communication feel impossible.

Uncertainty adds another layer of complexity to our grief, manifesting in two distinct ways. First, there’s the uncertainty about how vision loss will reshape our lives. Unlike the finality of death, which despite its profound pain has a certain clarity, vision loss raises countless questions about our future. How will it affect our professional life? Our relationships? Our cherished hobbies? Our independence? The sheer number of unknowns can feel paralyzing.

For many of us, there’s also the uncertainty of progression. Some vision loss diagnoses are progressive, with unclear trajectories. Just as we begin to adjust to one level of loss, we may face new challenges, new limitations. This constant adaptation can make it feel as though we’re chasing a moving target in our grief journey, adding exhaustion to an already demanding emotional process.

Consider this definition of trauma: it’s what occurs within us when we face a threat without adequate resources to remain intact. Vision loss threatens multiple aspects of our identity and daily functioning, while simultaneously making it harder to access traditional support resources due to the isolation and uncertainty we’ve discussed. This combination creates conditions ripe for trauma.

But here’s the hopeful truth: trauma can heal with proper care and support. I’ve experienced this healing personally, and I’ve had the privilege of witnessing it in others. Remember what I emphasized earlier—grief needs movement to remain healthy. If your grief feels invisible, difficult to express, misunderstood, overwhelmingly complex, or constantly shifting, please know that help is available. Your grief is a natural response to an extraordinary situation, and working with an experienced professional can help you process these feelings in a healthy way.

You can move through this. And despite how isolating this journey may feel, you are not alone.