GB Deaf swimmer Verity Green on living with Menieres Disease and vestibular disorders (BSL)

I am Verity Green from Catterick Garrison, North Yorkshire. I am a PhD student at Leeds Beckett University, and I also do some private work as a therapist as I am an MBACP Accredited Counsellor and HCPC registered Physiotherapist.

From the age of six my Mum noticed I was reporting episodes of dizziness. I would be too dizzy for school, but then I would be happy to go in the afternoon. I was already under the audiology department – due to being born Deaf, so I started being seen under ENT (Ear Nose and Throat) for the dizziness.

Age the age of eleven I was diagnosed with bilateral Menieres Disease. I would get spinning vertigo, nausea, tinnitus, hyperacusis and I have had permanent bilateral tinnitus since I was 11.  There has been no known cause for my Menieres, no-one else in the family has it.

Growing up my balance could be poor and I was falling over a lot. The parts of my childhood that I remember being difficult were that I was having to catch up on school work, and swimming – I swam for Great Britain in the Deaf team from 12 years old.

As I became older, this was more difficult to jump the gap. I was pushing myself a lot to try and keep up, but it was hard. I think that made my symptoms worse. I also remember that as things became worse, after the main ‘attack’ I would have what I now called the ‘hangover’ which is a few days to recover.

Imagine the ‘to do’ list that builds up, and the stress that goes with it. I remember school being flexible and purchasing a laptop for home, and trying remote work all those years ago, and a taxi to get in or get home.

At the age of fifteen I had a saccus decompression operation on one ear, then age sixteen on the other. This is when they cut open behind the ear and drill a hole in, to relieve the pressure and fluid, which theory was, building up and causing the dizziness.

I managed to get through my GCSEs and the Deaflympics in Denmark (winning Bronze in my main event), but three months after this, I was worse than ever. I was on a mattress on the living room floor to sleep because it was not consistently safe for me to go up and down the stairs.

The ENT consultant said that because of my age and fitness, we could try the last resort treatment, which was a toxic level of an antibiotic to destroy my semi-circular canals. This would mean I would have to relearn to walk again with my balance and I would likely never swim again. I was so unwell that I did not feel I had any other option.

Streptomycin, the drug, was what they used to use for Tuberculosis but they found that when they gave it to patients, it destroyed their inner ear hearing and balance. They gave me 42 (painful) injections over 3 weeks in hospital to try and build up the toxic level to destroy my semi-circular canals, but not the rest of my hearing.

I will never forget how I left the hospital. Walking down the corridor the world seemed visually weird. My brain no longer had the balance system feeding in to where I was in the world, and it had to use my eyes and proprioception to work things out.

It helped that I was young, and had a level of fitness. When I went outside it was terrible. Moving my head to look up and down the road, I would fall over. Cars moving would disorientate me and I would sway to fall. Walking up and down hills, I would stagger. I am basically left with a permanent disability called bilateral vestibular hypofunction.

I tried to get back to swimming, with it being my life and connection to the Deaf world. I travelled and communicated across boundaries. ‘Surely’ I thought to myself ‘if I push my brain hard enough, it will relearn?’

I went to a swimming pool and within 3 ½ lengths no longer knew which way was up in the pool, and was at risk of drowning. I had to be held up. I just wept – what the consultant said was true. I could not accept this and tried to push myself back into swimming.

What I did not realise is that I was pushing my brain too much, and my brain (and body) was telling me it was overwhelmed. I would cry with fear and anxiety in the changing rooms before swimming. My rankings lowered in the Deaf swimming (7th) – still exceptionally good for the consultant saying I would not swim again, but for me I thought I was a failure.

Later I was diagnosed with vestibular migraine. I realised this is my brain’s way of telling me that I have pushed it too far. Now, I have to consider that my balance is not the same, and that my vision has to work for my balance as well as communication.

I am more likely to fall, especially in certain situations that are visually tricky. I am more likely to face visual fatigue. I struggle with depth perception, and find having the right kind of Hearing Dog helpful for feedback up the lead to tell me where I am in the world.

I have to work a lot more on my proprioception and other senses to help me know where my body and the world is. Training to be a physiotherapist and then counsellor, and having some excellent supervisors in trauma and neuroscience, I learnt a lot over the years on how to reframe my thinking and realised how my body and brain were working.

It makes me consider where I shop (busyness), how I manage my days (pacing), and consider the amount of screen work I do as repetitive patterns appear like optical illusions.

I also have to remember to listen to my body and catch it earlier, and be wise about how I look after myself. Being smart about how I manage my conditions/disabilities means I can do things with the right support.

For example, I became the first Deaf British woman to swim the English Channel. I cannot swim in a pool easily without being overwhelmed with the repetitive patterns, lights and tumbleturns, but outside, I can use my extensive knowledge of proprioception as a former international swimmer, make sure I am safe with another swimmer and swim much slower for longer periods to let my brain have time to figure out where it is.

One thing that is so hard with Menderes is the fact that it is invisible. There is no physical change in you, so no one sees how ill you are unless they are the one who sees you struggling or vomiting in the morning.

My Mum told me I broke her heart when I woke up one day and said ‘I wish I could wake up one day and not be dizzy’. Yet everyone else I saw, only saw me on my ‘well days’, not realising that on those days, my brain was still having to relearn to balance again, or having to catch up on all the things that I had not done during my ill periods.

I felt quite shamed and looked down upon, when I was not at the same standard in my swimming. Yet only those who saw me in hospital, knew what had happened. If someone has a diagnosis, and has been in hospital, it is real and valid.

When I work with people with vestibular disorders – not just menieres but lots of other kinds of problems with the vestibular system – I always say that it really makes you feel confused about where you are within the world. The balance system, you do not ap

Once it gets tricked, or stops working well, you can get disorientated/dizzy physically, but also mentally. You start questioning who YOU are within the world. For that reason, it can easily create anxiety.

The last thing we need is negative judgement, or more pressure, or more on a to-do list. If you are alongside someone (and even finding it hard yourself as a ‘carer’ or supporter) – educate yourself and get support for you.

I think I found that I was doing as much as I could on the days that I felt well, but that then meant I was burning myself out. It may seem odd that they are ‘well’ and then they are not. This is all part of the (sometimes annoying) journey and trying to find the balance.

I think there are a lot of Deaf people about with lots of ‘rare conditions’ which may feel like me, alone in the Deaf community with the diagnosis. I am on many international social media groups and I can look on those for support if needed.

I think one difficult thing about menieres is the unknown for the future with it, and the unpredictability of attacks. I would strongly encourage people to look after their holistic wellbeing, to help their body and mind be as well as it can be, before, during and after the attacks.

I now want to complete my PhD – this is on Compassion Focused Group work with Military Veterans who are struggling with their Physical Health. After this, who knows? I think we have gaps in the NHS between mental and physical health, and I am fortunate that my background and qualifications make me enthusiastic about empowerment in this area.

By Verity Green