Why I chose to volunteer
I didn’t choose it so much as it chose me. For more than a decade, I have lived with a vestibular condition, and for years of that time I was misdiagnosed. I know what it is to have the floor move under you while everyone around you says you look fine. I know the loneliness of searching for answers in a language that has almost no words for what you are going through. I started volunteering because I did not want anyone else to go through that alone.
What I built
I founded a Facebook community for people living with dizziness and vestibular disorders, a place where people can finally say “me too.” Out of that grew a podcast in which I interview clinicians and researchers, so that reliable knowledge reaches the people who need it, in plain language. Then came VertiGoes, a bilingual Hebrew and English website that brings community and knowledge together in one place. I am now in the process of building an app that I hope will be able to help people living with vestibular disorders in their day-to-day lives.
A moment I will never forget
The moment I decided to start all of this was a phone call. A woman called me from Singapore. She had heard from a mutual friend that I suffer from vertigo, and she told me her story: how frustrated she was, how alone, and how everyone around her thought she was completely crazy. We talked until midnight. After we hung up, I could not sleep. I sat up the whole night and began building a plan for what I was going to do to change this reality. When I was a child, my father always repeated to me a line attributed to Mahatma Gandhi: “Be the change you want to see in the world.” That night, I finally understood what he meant.
Challenges I overcame
The hardest part is that I do this work from inside the condition itself. There are days when my own symptoms make it difficult to work, let alone hold space for others. But the deeper challenge is one we all share. I call people in our situation “the invisible ones.” Many professionals do not understand the problem and do not see it, and so they conclude that it is all in our heads. Not being taken seriously is one of the hardest parts of the road to recovery and to finding a solution. Building something from nothing, without a roadmap, while managing my own health and fighting to be believed, has taught me a great deal about patience and about asking for help.
The impact, and what it means for people in Israel
People with vestibular disorders in Israel often wait a long time for a correct diagnosis, and there is very little accessible information in Hebrew. What I hope I have given is a place to land: a community where people feel understood, access to professionals who speak to them as equals, and the knowledge to advocate for themselves in the health system. If one person reaches the right care sooner because of something they read or heard through us, it has all been worth it.