In 2018 I was experiencing Tinnitus and was diagnosed with a Vestibular Schwannoma, a brain tumour that affects your hearing, balance and, despite being benign, can cause many side effects.
A year later I had surgery to remove the bulk of it that left me with full hearing loss on my left side, from where I still experience Tinnitus and a small amount of the tumour around my facial nerve. It also hasn’t removed the balance issues, although they have improved from being unable to walk or drive at all.
Outside of work, I use Cros-Aids, which I wear both sides, transferring any noise on the left into my right ear. In busy environments, including at work, this can cause more confusion as I am unable to understand where noises are coming from and all background noise is enhanced. Despite being deaf in one ear, the
When working for 111, I could sit in a quieter part of the advice centre and was given a single sided headset, to fully cover my working ear. My colleagues are fully aware of my hearing issues and are very understanding and patient with me.
My balance can cause me to ping-pong off walls and door frames, particularly if I’m feeling stressed, but I am allowed the space and time I need to adapt and recover as needed thanks to my colleagues understanding.
For my condition I still need radiation treatment for the remaining tumour, that I’ve decided to name Mr Flibble, which is still growing. My team and managers are very supportive of the time for this and my recovery afterwards and I feel able to talk to them about it, how affect me and how they can help.
I think that it would be very helpful to have a badge or lanyard that would inform people straight away that I have a hidden disability. It can help to start a conversation which would help me and other people understand my condition, how it affects me and bring it out into the open.
I’m not defined by my Vestibular Schwannoma, but it is a part of me and talking about it helps people to understand.