I love Christmas. I love the childlike, contagious joy. I love the happy, and sometimes emotive music. I love the delicious baking aromas dancing through the house. I love the colourful decorations, the shiny baubles a grand temptation for our family cat and mini dachshund.

But, I don’t like the work gatherings. Three in five days this year.

I dislike not being able to strategically choose where to sit where I know I will have a better chance to hear to participate in conversations. I struggle with the unknown event planner sitting me at a table where conversations are bouncing around me, left and right, behind, in front, and back and forth, sometimes words heard, sometimes not.

I loathe the loud noise surrounding me, as I try to tune into the drowned-out conversations, the excess noise competing with the limited hearing in my good ear and it’s hyperacusis, and my cochlear implant in my Meniere’s ear.

I grapple with the embarrassment of asking someone to repeat themselves. Once. Twice. Sometimes three times.

And I deplore feeling like a fake, pretending to be a normal person who is perfectly happy, like everyone else seems to be as they enjoy every moment, while I sit there as a wobbling pool of anxiety that makes me want to flee from the room.

I hate being an observer, looking for who is talking … the unremitting, tiresome watching … watching how other people are reacting to what is being said that I cannot hear properly. Should I fake smile now? Should I pretend to laugh now? Should I look crestfallen now? Should I shake my head from side to side like others now? Should I nod, now?

I despise being the copycat, and the battle of trying to fit in.

I hate … how utterly exhausting it is.

And I resent how it makes me feel. Like I’m not good enough. Like I’m an add on. Like the others are just being polite to me.

I hate what Meniere’s has done to me. I feel like I am living in a world where I don’t belong. A misfit.

I feel like I am a spectator to a life that is full of colour, while my shadow, Meniere’s, drains the colour from my life.

And then I feel disappointed in myself.

I should be thankful that my vertigo was destroyed by gentamicin, also destroying my balance and having to relearn to walk using my eyesight. I should be thankful that I have a cochlear implant. I should be leaping with joy that I can still teach in classrooms of teenagers, guiding them, helping them to grow their wings so they can be whatever they want to be in life.

But, my work friends and colleagues (whom I love and adore) don’t know how exhausting it is trying to fit in with their photobooths, their conversations in a loud background environment, their misbelief that perhaps my life is as normal as theirs, when in fact my struggle is exhausting, riddled with the poison of life destroying anxiety.

They don’t know how, when I go home, I have to pick up the pieces of me that are breaking off to the reality that I feel like I don’t fit in. That I will never be normal. Like them.

They don’t see me as I melt into a pool of self-pity.

How do I ask my generous employer for an exemption from the compulsory celebratory gatherings? How do I explain I don’t want to go to the extravagant, lavish, work celebrations to stop the physical, emotional, and psychological fallout? How do I explain these social gatherings make me want to run from the room, or sink into a corner where I can be invisible? How do I explain that I don’t want to go so I don’t have to suffer my own personal after-celebration post-mortem of overthinking, and tears? How do I explain that I don’t want to go, to stop me waking at 3am, hating being me, and hating my shadow, Meniere’s.

And then I think … the person who others think I am, the version of me they see at work, is entirely my fault. I’m exceptional at covering up my disability and my invisible illness. 26 years of Meniere’s. I’ve had a lot of practice. They can’t see me working hard to keep my balance. They can’t see me working hard to have a conversation with them. They don’t see my cochlear implant, hiding beneath my hair.

And then I remember…

I am a survivor. A fighter. What I have been through with Meniere’s disease is heartbreaking. Devastating. Life changing.  

I suck in a breath and hold back my tears …

But still. I so hate this. I so hate what Meniere’s has done to me, and what is has done, and is doing, to others.

I think back to the advice I generously give to others, reminding myself to use it –

• Change your mindset from negative to positive.

• Look for the small triumphs.

• Celebrate the small wins.

I’ve done it a thousand times before. And I must continue doing it …

Well, I did do it! I survived three social celebrations in five days, as physically exhausting as it was. I’m thankful to be invited. It would be worse to be left out. I connected with another work colleague who is deaf in one ear. I asked her how she was going with all the noise, thinking how blessed I am to have a cochlear implant. I watched as normal hearing people struggled to hear conversations, me sometimes hearing the conversation better than them with my Cochlear Implant! And I had very patient friends and colleagues who did repeat words for me, and understood. And I thank and honour them for their kindness.

If you’re reading this, finding yourself nodding your head with perfect understanding, and even perhaps, tears falling, remember, if you are going to a social event, you can do it! I totally get what you are going through. Look for the helpers. Look for the good things that happen. And … forgive yourself. Forgive others, for they do not understand. Be kind to yourself – intentionally, extravagantly, unconditionally.

Good things are coming … I know it.

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Macquarie University, where they are researching Meniere’s disease to find a cure. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

Purchase ‘The Colour of Broken’: print book & ebook or audiobook (narrated by the incredible Heather Davies)

Purchase ‘All the Colours Above’: print book & ebook

Purchase ‘Daily Meniere’s Journal – 3 month’: print book

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