Living With A Vestibular Disorder

I recently purchased this “Gorgeous” shirt, to help me feel a little more gorgeous. You see, I’ve been battling with a vestibular disorder called vestibular neuritis.

This condition has quite literally turned my life upside down. It came on suddenly and now I live with a constant feeling of being on a rocking boat (even when asleep), persistent vertigo (room violently spinning) and significant loss of balance (I’m always falling over when out in public and often look drunk when I walk).

You know that feeling you get when you spin around 20 times with your eyes closed and then you try and walk a straight line? Well, that’s what it feels like for me all day, every day.

I also have extreme sensitivity to light and sound. The supermarket is like kryptonite to me – with the ridiculously bright colours and loud music, and need to manoeuvre through the rushing people moving in different directions. So, I have to avoid supermarkets, cafes and anywhere where there are people, lights and noise.

These symptoms are because my vestibular system has been damaged. The vestibular system involves the inner ear and brain and is responsible for coordinating our balance and sense of where we are in space. There are several types of vestibular disorders including Benign Paroxysmal Positional Vertigo (BPPV), Vestibular Migraine and Meniere’s Disease, to name a few. 

I feel far from gorgeous nowadays, as I’ve lost my sense of self, my confidence and my life has completely changed – because this is a silent disorder. I’m sick and have lost function, but unlike a broken arm, my friends and family can’t see it because the problem is hidden inside my brain.

So, when I found this gorgeous shirt, I was excited to buy it. But then that self-critical inner voice started telling me, ‘People will think that you think highly of yourself if you wear a shirt saying that’, and other derogatory statements.

Last week I wore that snazzy shirt for the first time. I used my walking stick and strutted (wobbled) into my vestibular rehabilitation appointment with my head held high, not giving two hoots about what anyone else thought of my cane, my shirt, my hair, my choice of fabulously red lipstick or what I had for breakfast.

If you know someone with a vestibular disorder, appreciate that it’s a debilitating and life-changing illness. They will likely be suffering in silence, feeling alone and far from their normal self. Offer to hang the washing out for them, drive them to the shops, you could even do something to help them feel that little bit gorgeous.

If you have been diagnosed with a vestibular disorder, a specialised vestibular physiotherapist may help you manage your condition.

 What is a vestibular disorder?

The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. Vestibular disorders can also result from or be worsened by genetic or environmental conditions, or occur for unknown reasons.

What are the symptoms of a vestibular disorder?

• Vertigo and dizziness
• Imbalance and spatial disorientation
• Vision disturbance
• Hearing changes
• Cognitive and/or psychological changes

The type and severity of vestibular disorder symptoms can vary considerably and be frightening and difficult to describe. People affected by vestibular disorders may be perceived as inattentive, lazy, overly anxious or seeking attention. Functioning at work or school, performing routine daily tasks, or just getting out of bed in the morning may be difficult.

Find out more about vestibular disorders at vestibular.org