What It's Like to Be a Young Person With Vestibular Dysfunction

Doctor: “You have unilateral vestibular hypofunction at only 40 percent. You’re a fall risk. It must take an incredible amount of energy to stay upright and focused…?”

“You have no idea,” I replied, as tears welled in my eyes.

Doctor: “We will start you on balance rehabilitation but there is no guarantee it will work and if it does there will always be reoccurring episodes as its not curable.”

That was what I was told when I was diagnosed with a inner ear disorder this past March, explaining my sudden onset of extreme balance issues. “Damage to your right inner ear affecting balance/eye movement and we aren’t sure what the cause is. Infection, autoimmune issues and brain injury are among some of the top causes.”

This hit me like a ton of bricks and has been the most difficult condition yet to cope with. Your vestibular system controls your balance and you would be amazed at how greatly it affects your vision once it is damaged.  All of a sudden it takes extreme focus on minor tasks such as reading the price on a shelf tag or walking through a store with the lights reflecting off the floors and stimulation of people, bright colors or objects moving by affecting vision while your head is already spinning. This creates terrifying episodes of vertigo or the feeling of blacking out or extreme confusion.

Reading books becomes almost impossible as words jump and vision doubles. As I’m typing this I primarily look at the keyboard and briefly glance up to read and proof the many mistakes I make. This is my new normal. Once you lose your balance you wish and pray you would get it back.

When I start rehab I walk into a room where I am greeted by my therapist. She kills me with kindness because she understands how difficult this condition is. It’s nice to feel understood but terrifying to know it’s my new normal. I explain my history and she does a brief retest of simple balance tests including the posturography machine as seen in image. She explains I should be at 100 percent but I’m only functioning at 40 percent. As I enter the large rehab room I notice one thing… I’m the only young person in there. I try not to care and I try not to crack jokes. I’m guilty of cracking jokes and making fun of myself when uncomfortable.

doing a posturography test

As I’m preforming VOR and standing/walking balance exercises, I quickly realize how severe I am compared to the elderly gentleman in one corner and the middle age woman in another. I close my eyes, walk straight, open my eyes and I’m two feet left of the line I started on. My walking is constantly corrected as if I’m learning to walk again. This was my first session and I didn’t want to go back. I was feeling so alone due to my age and so angry due to the severity. I was in therapy shaking my head slowly left then right – that was my exercise… to shake my head slowly as if saying “no,” and I was symptomatic just like that, from something so small… so simple.

I thought, “What did I do to deserve this?”

How a vestibular disorder feels…

Imagine a fun house mirror in the worst episodes mixed with confusion. My day consists of nausea, visual disturbances, headaches, general dizziness, unsteadiness and blurry, oscillating vision. At times when it’s dark or the sidewalk’s uneven, I fall sideways as if walking on a moving ocean wave. With a VD you can have difficulty concentrating, retaining information and enjoying simple activities. With my severity I consider it a condition where I cannot be fully independent.

Overall, vestibular disorders range in severity for individuals. I don’t want to scare you all – my case is moderately severe – but that may not be the case for you. There are days where it’s difficult to cope with this new normal, but day by day I do my exercises and take on the world.

How does your vestibular disorder affect you? Do you use medical equipment for support? Can you drive or are you independent? How do you cope? Do friends and family support you?

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