Living With Usher Syndrome: Practicing, Prioritizing, and Protecting Your Mental Health

By Rebecca Alexander, LCSW-R, MPH, RYT
Mental Health Advisory Council Chair

Getting an Usher syndrome diagnosis isn’t a single, life-altering moment – it’s a process, a series of reckonings, an evolution of internal shifts. Some of the shifts are quieter, more subtle, and others can feel deeply painful, even heart-breaking. One thing is for certain, it’s never just about your vision or your hearing — it’s about your identity, your independence, your relationships (with others but more importantly with yourself), your livelihood, your confidence, your future, and your sense of safety in the world. 

My diagnosis wasn’t a single moment—it came in waves. Genetic testing and early screening have come a long way since then, but when I was officially told I would lose both my vision and hearing, I couldn’t grasp the full meaning of it. The reality didn’t hit me all at once. Instead, it wove itself into my life in subtle, persistent ways—struggling to read a menu in a dim restaurant, hesitating at a busy crosswalk, missing the punchline of a joke in a noisy room. It was as if the diagnosis was constantly revealing itself, making it much harder for me to move through the world the way I knew how to before I had words for how I felt about what was happening.

As a psychotherapist, I understand that grief doesn’t just come after loss. It comes with it—when you’re still functioning, still showing up, just doing your best. That’s what makes living with Usher syndrome so complex. You’re constantly adjusting to what’s slipping away while trying to stay grounded in what remains. At the same time, you’re bracing for what’s next—trying to plan for an uncertain future, even as you’re still making sense of the present. It’s a balancing act between acceptance and anticipation, presence and preparation.

There’s no one right way to cope, but here are a few tools I’ve found essential:

• Make room for all of it. Gratitude and grief can co-exist – believe it or not, they really like each other. You can be thankful for what you have and still mourn what’s changing or what you’ve lost. Holding both is not a contradiction—it’s part of being human. The more space you give yourself to feel the full range of your experience and emotions, the more honest and compassionate your relationship with yourself will become.
• Let people in. Isolation can take a greater toll on your well-being than the challenges of living with Usher syndrome. Whether it’s a therapist, a close friend, or someone who just “gets it”, finding connection is crucial. You don’t have to navigate this alone despite how lonely you may feel at times — having support changes how you cope.
• Develop language for what you feel and what you need. Being able to acknowledge what you’re experiencing helps others understand how to better support you—and helps you stay connected to yourself. Saying, “I’m doing the best I can, but this is really hard,” isn’t weakness—it’s honest and real. So is, “I want to be included, but I need some help to make that happen.” Clarity doesn’t make you a burden – it makes connection possible.
• Practice non-judgemental self-awareness. Notice how you’re feeling without doing everything you can to avoid it, distract yourself from it, pretend it isn’t there, or try to fix it. Some days are just really hard.

Give yourself time to grieve what’s changed and what may still change. Mourning isn’t the opposite of joy—it makes space for it. Grief doesn’t define you, but allowing for it is part of what makes you deeply human and whole.