Living with a Chronic Condition with Destiny Davis LPC CRC

I am thrilled to welcome Destiny Davis to the show, a Licensed Professional Counselor and Certified Rehabilitation counselor who specializes in the complex world of chronic illness. Destiny brings a unique dual perspective to our conversation as both a professional in the field and a family member who grew up navigating the impact of her father’s sudden blindness and a traumatic brain injury. Today, we explore the "bio-psychosocial" impact of living with a disability and why the concept of "scaffolding" is essential for both ourselves and those who support us. Get ready for a deep dive into the importance of aligning our daily actions with our core values, even when faced with life-altering challenges.

Holding the Hand That Holds the World

As a psychotherapist who has lived with legal blindness for years, I often find myself talking to clients about the "weight" of their diagnosis. But in my recent conversation with Destiny Davis, a fellow Licensed Professional Counselor and Certified Rehabilitation Counselor, we touched on something I think we often feel but rarely name: the exhaustion of having to teach the world how to treat us while we are still learning how to exist in it ourselves.

Destiny’s story is unique. She grew up with a father who became blind and paralyzed following a motorcycle accident when she was just eleven. She watched him navigate a world that was suddenly entirely different, where even the placement of a cup on a rolling table became a battleground for autonomy. Her insights into the "bio-psychosocial" impact of disability—how it ripples through our physical bodies, our mental health, and our social environments—struck a deep chord with me.

The Truth of Two Things

One of the most powerful points Destiny made right at the start of our talk was about the necessity of holding two truths at once. For those of us with low vision, those truths often look like this: I am grieving the sight I have lost, AND I am capable of building a life full of meaning. Or, The world is not built for me, AND I have the creativity to find my way through it.

When we stop fighting the "cognitive dissonance" of our situation and accept that life is complex, we give ourselves grace. We stop drowning in the "shoulds" and start swimming in the "is".

Scaffolding: For Us and For Them

We spent a significant portion of our time discussing "scaffolding". In child development, scaffolding is when a teacher or parent holds a child’s hand at the bottom of a ladder and only lets go once they feel confident. As adults adjusting to vision loss, we need that same support—often through therapy or community.

However, the "unjust burden," as I call it, is that we often have to scaffold the people around us too. Our family members and friends are often scared of getting it wrong. They may offer help we don't need or stay silent when we need them to speak up. Destiny suggested a brilliant tool: creating a shared Google Drive or PowerPoint for loved ones. It provides a place to put the "words" that often fail us in the heat of a moment, allowing our support systems to learn on their own time without us having to repeat ourselves while we’re already fatigued.

Living by Values, Not by Symptoms

Perhaps the most therapeutic part of our discussion centered on values. When you live with a chronic condition, it is so easy to let your symptoms—the fatigue, the blurriness, the pain—become your primary identity. But as Destiny pointed out, if we align our behaviors with our values—like kindness, courage, or health—the "outcome" matters less.

If I value health and I choose to get good sleep and stay hydrated, I am successful in my values regardless of whether my vision improves that day. This separation allows us to say: I am not my disability; I am the person who lives with a disability. That distinction is where peace lives.

Moving Forward

If you are feeling isolated or "unseen" in your journey, please know that your frustration is a normal response to an environment that isn't always set up for you. But like the cell towers that eventually covered the country, our community is building the infrastructure of support we need.

Keep advocating, keep scaffolding when you have the energy, and most importantly, keep holding onto the truth that you deserve access to a rich and gratifying world.

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013 Personal Perspectives on Vision Loss with JP Patterson