Welcome to our new four-part series, written by Stephanie Steggehuis, sharing her personal insights into living with vestibular conditions. Across these blogs, Stephanie explores what it’s really like to navigate life with Bilateral Vestibular Hypofunction (BVH), from the physical challenges to the emotional impact. In this first post, she reflects on the hardest part of BVH—feeling like you’ve lost yourself.
When you first get a diagnosis like Bilateral Vestibular Hypofunction (BVH) or any vestibular condition, you expect dizziness, balance issues, maybe nausea. What you don’t expect is how deeply it changes how you feel about yourself. The hardest part often isn’t the physical symptoms. It’s realising that you’re not the same person you used to be.
The loss no one talks about
You might remember walking easily through a store, chatting with friends in a busy café, or driving without thinking twice. Now, things that used to feel effortless can seem impossible. It’s not just frustrating, it’s heartbreaking. BVH happens when both sides of your inner ear stop sending the right signals to your brain. That means your brain has to work much harder to keep you balanced, and every movement takes extra effort.
More than physical
The emotional side of vestibular disorders doesn’t get talked about enough. You’re grieving the version of yourself who could do things freely and confidently. Many people with BVH say that feeling “different” or “not themselves anymore” is harder to accept than the dizziness itself. It’s a strange kind of loss, because on the outside you look the same, but inside everything feels different.
Learning to live as the new you
Healing starts when you stop comparing yourself to who you were. That doesn’t mean you’re giving up. It means you’re allowing yourself to grow into a new version of you. A version that still deserves joy, confidence, and independence.
Try small steps that rebuild trust in your body. Work with a vestibular therapist to help your brain adjust. Make your home safer and easier to move around in. Be honest with friends and family about what you’re feeling. And most of all, be kind to yourself. Progress can be slow, but it’s still progress.
Finding yourself again
You might never go back to exactly who you were, but that doesn’t mean you can’t feel like yourself again. You’re still you, just with a different balance system. And with time, patience, and the right support, you can start to feel steady and confident again.
If you’d like to explore tools that can help you feel more stable and more like yourself, the BalanceBelt may help you regain confidence in your daily life.
The journey to adjustment can be challenging, but you’re not alone. In the next post, Stephanie will explore why fatigue with a vestibular disorder feels so overwhelming, helping you understand one of the most common yet often invisible challenges.
Written by Stephanie Steggehuis | Marketing Copywriter living with BVH and Oscillopsia