Advocacy,  Health,  Life

Labyrinthitis – An Invisible Illness

3 years ago, I was told I had Labyrinthitis, which is an inner ear infection. It causes severe vertigo, sickness, sudden loss of hearing, a lot of pain, and most of time I struggle to stand.

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It was the first time I ever had this, and hoped that medication would help. It did…. But unfortunately the condition came back. And the same pattern has repeated over and over again throughout the years.

When I get a spell of Labyrinthitis, they are often quite bad. This means that I fall, or need support from my loved ones to keep me up or I’ll collapse. I can’t keep balanced and am often swaying left, right and center. I can go completely deaf in at least one ear which makes it extremely hard to listen. I often have to sleep on and off throughout the day to relieve symptoms. I even sometimes have to lay in a pitch black and silent room. Even the littlest of sound or light can make me worse.

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Despite having this condition for so long, it’s still something that even now, I feel I have to explain in detail. But why?

Since being diagnosed, I’ve been accused of being tipsy/drunk. I’ve been accused of “using the system” to get a free bus pass. People often look at me and say that there is clearly nothing wrong with me. It’s been considered that I’m lying because “how does a spell just come on suddenly?”

The expression “seeing is believing” is often thrown about, and unfortunately your problem has to be “seen” to be considered real. This is the problem with all invisible illnesses. How do you raise awareness of something that people think you just made up?

You talk about it more and more! This is why I will continue to explain myself if I have to.

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Although my condition may make me look like I’m drunk, I can assure you I’m not (I’ve never been drunk once in my life).

Due to Labyrinthitis and relating conditions, the DVLA have stated I am not fit to drive. I have instead been provided a bus pass. I wish I was well enough to drive.

For me, Labyrinthitis does come on suddenly. I was in my lecture the other day when a very bad spell came on half way through this lesson. I somehow managed to make my way to the front of the uni where my partner came to meet and look after me. Without him, I would not have made it home safely.

We judge so easily. Please take time to learn and accept these illnesses. Everyone has their own invisible struggles. Just because you can’t see their illness, trauma or difficult times, this doesn’t mean that it is unreal or unimportant. So please remember to listen and do your research before you judge someone.

Thankfully there are people out there who do listen. They may not understand completely what the condition is like, but they do support you and will help you. I’m thankful for my loved ones and friends who help me when my Labyrinthitis strikes.

https://www.nhs.uk/conditions/labyrinthitis/

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