The cost of hiding non-visible disabilities
Updated: Oct 26, 2022
In my work I spend a lot of time supporting organisations in the development of an inclusive workplace, one where everyone feels respected and a sense of belonging. As inclusive leaders, we need to be able to lead by example and model how powerful it can be to be vulnerable and our true authentic selves. Sounds great in theory right? But in reality for some, it is not easy and a few weeks ago something happened which made me reassess my life, values and priorities completely. How it began…
Around 10 years ago I started experiencing a blocked sensation in my left ear. Like increased pressure you get when on a plane. Sometimes it was so bad everything was muffled and I experienced distorted sound and tinnitus. I went to the doctor various times over the years and was diagnosed with an ear infection, build up of wax (nice!) and on one occasion, suspected enlarged adenoids which were operated on to reduce them in size. But it continued to come and go. As a musician I would notice a pitch difference in my left ear to my right. This was diagnosed as diplacusis. A form of hearing loss that causes a person's ears to hear sounds so differently they create a disturbing two-sound experience. I was advised that the intermittent hearing loss would more than likely become permanent as time passed. I resigned myself to this fact and carried on as normal. In 2020 I was at my mums having a particularly bad hearing day (she had to sit on my ‘good’ side to be heard) when I got up to go to the bathroom. Only to quickly sit back down again as the world began spinning violently. I had no idea what was going on and the more I tried to focus and make it stop, the worse I felt. My mum, being a mum, bundled me into the car and took me to A&E where I sat with my eyes closed for 1.5 hours waiting to be seen and for the world to stop spinning. Eventually it did and the doctor asked me a few questions referred me to ENT…. Again. In the months I waited for my appointment, I experienced another vertigo attack, thankfully when I was home and could lie down and wait for it to pass. When I finally went to ENT I had audiology exam and an MRI scan. They asked me lots of questions about my ear and symptoms and then the audiologist said matter of factly “It sounds like you may have Ménière's disease”“Meni what?” I remember asking. “And did you say disease? ”Now I don’t know about you but when most people hear the word disease it brings to mind something terrible, contagious maybe. Definitely not good. “Oh yes,” she said, “I can give you a link to find out more but I think you’ll find that’s what you have”“Is there a… cure?” I asked tentatively? She didn’t look at me, but continued tapping on her keyboard. “No, not at the moment unfortunately” she said. She then handed me a bit of paper and told me they would be in touch.
And that’s when I found I had Ménière’s disease. Just like that. Following the diagnosis I did a lot of research (as you do) and learnt a lot more about the condition. It’s caused by a build-up of fluid in the inner ear, according to The Meniere’s Society, which interferes with the signals to the brain responsible for balance and hearing.
This causes the affected person to have a number of symptoms including vertigo (dizziness), imbalance, tinnitus (ringing and other sounds in the ears), and hearing loss.
There is no cure but they recommend avoiding salt, caffeine and alcohol (not too bad - I hate coffee! Alcohol though… !!!). Regular exercise can help and lots of water. I made the changes and for 7 months, nothing. Some ear issues, but no vertigo.
I remember thinking, “maybe they made a mistake?” I didn’t realise at the time I was in a period of remission. During lockdown the vertigo returned. Thankfully being at home I was able to ‘sense’ something was not right before the episode (known as an aura) and get myself into a dark room and lie down until it passed.
Now I look back, working from home was a God-send and allowed me to take the time I needed and manage my symptoms. All was ok. I could manage this. I mentioned it to a few friends and family but no-one else. I think because it didn’t have a huge impact on my life, I didn’t see the need to tell the world. That is until a few weeks ago. I was out celebrating my sister-in-law’s birthday at a restaurant with family and friends. All was going well. We’d had a lovely meal and my brother in law and I were putting the world to rights. I did have a very blocked ear I recall but managed to deal with it turning my head to my ‘good’ side.Suddenly without warning, the world began to spin. I remember the pressure and fullness in my ears and the overwhelming sense of nausea. Realizing I what was going on I tried to breath and close my eyes but the sensation of spinning intensified and I knew I would be sick.I got up and ran to the stairs to the downstairs toilets, knocking into things and people who I knew would assume I was intoxicated. I just about reached the cubicle where I vomited profusely. I could not stand and if I opened my eyes the spinning made me vomit even more. I remember hearing voices as people tried to open the door (blocked by my feet) as I lay on the cubicle floor with my eyes closed.
Every now and again wretching and gagging while the world kept spinning. “How much did she drink?” My sister-in-law asked“Is she on medication?” Someone else asked. “No. ” My husband said “she has Ménière’s disease”. I was so glad for the words I heard next “Oh dear. So she’s having a vertigo attack”. She knew. The voice knew. My husband expressed surprise also “I’m a nurse”. She said. “Poor thing. She needs to lie down but not here.”The rest of the night is a bit of a blur. Somehow they managed to get me off the toilet floor, into a car and back to my sister-in-law’s house where eventually, some 3 hours later, the spinning stopped.
The next day I felt exhausted, dehydrated had an awful migraine but most of all, shame and guilt. I had effectively ruined my sister-in-law’s birthday by causing people to worry about me. I realise I had spent so much time and effort hiding my symptoms and this part of my identity for so long it was exhausting.
I wanted to protect my loved ones from the negative emotional and physical effects of my disease but in the process I had isolated myself wasting valuable time covering instead of showing up as who I am. Why? I think partly because my symptoms did not appear very often I didn’t want to worry people unnecessarily.
But when I thought about it some more , I had to admit was in denial and was also afraid of how I would be judged if I disclosed that I had a non-visible disability.
I now realise this was not good for me or fair to others. This latest episode has made me realise why it is so important to reach out, be honest, and bring others into my world that I trust while I am living with Ménière's. The etimology of Ménière's disease remains scientifically disputed but I do know the condition does not respond well to stress. I have practiced TM meditation for over 10 years (somewhat sporadically) but now I mediate everyday and this has been helpful in calming my anxiety. It is especially useful when my tinnitus feels overwhelming. I often relax and sleep to music, or a white noise sound like ocean sounds to mask the sound and help me sleep.
Essentially I live my life in a manner in which Ménière's never wins. It has the power to bring me to my knees—both literally and figuratively—but I will simply just keep getting up. I need to be more discerning when making plans to go out and see friends and family, and I have found it helps to being physically active. This allows me to retain some control when I feel like you have none.
The gift that Ménière's has given me however is a level of introspection and awareness and forced me to explore what is truly important.
I realise that I as a person with a non-visible disability, I am in a position to raise awareness and speak about my experience to help others.
Everyday I don’t have any symptoms is a blessing. I am grateful and find great joy in the moment. I have learn to prioritise my well-being and let everyone know, family, friends and clients, even strangers (I have a medical ID bracelet) so they know how to help. I’m a great believer in what for? and not why? And I will continue to take everyday as it comes.