Understanding Meniere’s Disease
When I was first diagnosed with Meniere’s Disease in my 20’s, I was adamant that I would not be an ‘advocate for an unknown, misunderstood & complex disease’. I had no words to describe what was happening. What could I say.
The few people I told; they were understanding and looked after me when I was mid attack, but the chaos I felt could not be seen. Over a period of years, and a sixth sense about these things, I started saying ‘no’ to going to events, and then stopped being asked.
New people I met fell into two catagories:
a) openly admitted they had never heard of it, read everything on the internet – panicked during an attack and then told me how powerless they felt, or
b) dismissed it as something they had never heard 0f so ….
If I am honest the idea of ‘dismissing Ménière’s disease as nothing’ was something I personally was trying to do – but then when an attack happened – I seemed to have lost my footing in the middel ground of wanting everything.
- Comforting someone else after my Meniere’s attack – during the post attack tiredness added an unwanted burden.
- Being considered unreliable, hearing others talking about you in voices loud enough to be heard, alongside the opinion of what might be wrong with me – linking moments of behaviours together.
Its not just doctors that diagnoses towards ‘seeing is believing’; people form opinions based on what they see – and evidence to back it up.
Slowly I stopped talking about it all.
Today a friend of mine messaged me – saying she had read a book called Enchantment by Katherine May.
(Disclaimer: I have not read the book, and I also receive no fees for promotion or links to products)
However, I do trust my friend – the fact that she had read something, thought of me, and wanted to share it with me – even with copies of the pages which talked about about biological changes since the author experienced COVID, post illness hearing issues and dizziness – which are compared Meniere’s Disease.
I was reading this description of Meniere’s and it make me think of you . It sounds dreadful and a bit otherworldly.
My website www.RuthWilson.xyz is focused on A life with Meniere’s Disease. My personal sketchbook of the ‘unseen’ and ‘unspoken’ & ‘ living with invisible’. The battle and the beauty of biology.
As a visual communicator it did occur to me that words can be interpreted many way and are always based on personal context.
The two paintings below are how I feel when having an attack.
The timing of my friends message, her thoughtfulness – made me cry.
I had just arrived home from a hospital appointment to test my peripheral vision in my left eye. When I agreed to undergo a Labyrinthectonmy in 2009, ( surgical procedure of the temporal bone used to treat intractable and refractory vertigo) I remember saying ‘Yes’ to the procedure. It was not the ‘Forever Cure’ I desperately hoped for. I have learnt the questions I would ask if ever in a similar situation, but functionally for a short while, it provided a semblance of life -which I needed.
FREE GIVE AWAY;
My first (as an artist / advocate – I didn’t want to be in my 20’s)
- I have 10 packets of original pieces of art work, which I will give to 10 individual people
- I doodle everyday, I have mountains of paper – showing a glimpse of what my life is like living with Meniere’s Disease.
You might ask yourself why and I doing this?
Firstly: Meniere’s Disease is complex. Visualisation is a power tool to clarify, and reveal insights. This offer is not connected to the book my friend was reading – if you have never experienced the fear of knowing that you could fall to the ground, be so disorientated due to dizziness that you unable to communicate – and people, don’t stop to help – their perception – you could be drunk.
Secondly: I could have easily spent the time this afternoon feeling sad. I cried, find aspects of life extremely difficult … but a doodle or two … if it helps increased understanding – that makes me happier.
The Art packets are all different sizes, all unframed – some are painted, some drawn, some ink, some with colour and some without.
The only ask I make – if you repost any of these gifts on social media, then please credit me as the artist.
I am based in Amsterdam, so everything will sent from the Netherlands – so can’t not exactly say when they will arrive, but I confirm they have been sent via track and trace.
All original – so if you are interested, click on the link