Ali Maloney is a writer, performer and Scrum Master. He lives in Edinburgh and enjoys loose-leaf tea, good food, woodland walks, and arthouse horror. He’s also the author of: “Spinning through Fog (High Salt Content): Addison’s Disease and Hormonal Treatment”. It’s one of 30 personal essays included in the book “So Hormonal”. In this anthology, different contributors discuss topics including thyroid and polycystic ovary syndrome (PCOS) and the roles that these conditions and hormones play in our daily lives with refreshing openness and honesty. 

After reading Ali’s brilliant essay, we got in touch to speak about his route to diagnosis, what he’s learnt along the way and how he has made the disease work for him, and as in his words “make at least one person going through the journey I took see a little bit of light along the way.”  

Capturing Experience

“Have you just been on holiday?” It’s a phrase I was often asked when we were in the office. Now, I am starting to see people again for the first time in 18 months, I am being asked it again. “You look so tanned!”  

Of course, it is always nice to be told that I am looking radiant. But under that compliment is the fact that the changes to my skin are obvious. The freckles that start to grow and cluster around my cheeks — that I often asked myself if they really were that noticeable — assert their dominance over my appearance. As someone who really didn’t become comfortable with my face into my 20s, this is no small thing.  

How It Started  

I was diagnosed in 2014. I’d been severely ill for almost a year before but hadn’t quite connected the dots between symptoms. I had explained had away each individually: the utter dizziness when standing up, the pervasive craving for salt, the constant and extreme tiredness, the dramatic weigh loss… I had just thought it was me getting old (I was 33) or the trials of having a new born baby at home. 

I’d been off work sick so many times that I was told if I was off again, I’d face a disciplinary. I didn’t want to call an ambulance. I wanted to sleep it off and go to work the next day. After perhaps the most dramatic and harrowing night of my life, I was told in no uncertain terms that if I had gone to work that day, I would have dropped dead.  

Where to Next?  

My diagnosis of Addison’s disease was terrifying and all consuming — but, on the flip side, gave a name and a tangibility to all those enfeebling symptoms I had been experiencing beforehand.   

Afterwards, once I emerged from the intensive care unit faced with months of work to rebuild my strength and surrounded by GPs who didn’t quite have a handle on the condition, I relied on my own research. Googling any medical symptoms or conditions is a recipe for worst-case-scenarios — but sometimes it is difficult to see an alternative. The hospital endocrinologist told me I would live a ‘normal’ life but every hit brought up people younger than me who were medically retired, battling steroid-induced weight gain, and those struggling with limited, unpredictably low energy levels.   

‘Normal’ is a relative concept. So, living a normal life is different to everyone. When I was scouring for more information on Addison’s and trying to navigate my own way through this disease and what it meant for my life, I desperately wanted to read of these people being ‘normal’. I struggled to find their stories.  

It became important to write about my experiences. I wanted to write what I wish I could have read back in those early, exhausting and bewildering, days. I wanted people to know that diagnosis isn’t an end, that, with care and accommodations, I can live a ‘normal’ life.   

Photo credits: Rich Dyson Photography

When cool Edinburgh-based independent publisher Monstrous Regiment put out a call for essays on hormones, I pitched them my story. Of course, I worried that amongst all the variety of ways in which how they impact our bodies — many of which call for immediate, vital action and outrage — my story would not be as necessary.  

Of course, I’m delighted to be included in this powerful and important collection.  

Photo credits: Rich Dyson Photography

How It’s Going  

Since diagnosis, I have had a second child, bought my first home, forged a career path for myself and taken several promotions along it, been through a difficult break-up, ran a performance art cabaret company, performed shows; travelled, partied, loved, lost, and pushed myself. Currently I work a high-stress job, am developing a Creative Scotland funded theatre show for touring in 2022, and am travelling regularly from Edinburgh to Nottingham to see my kids. It’s one normal, I guess. 

Not that this is without careful management. My energy expenditure requires vigilance and discipline. I regularly schedule off-days and need to be really clear whether my day off is a ‘rest’ day (go for a walk, watch a film, write, make music, cook a nice meal) or a ‘recovery’ day (do nothing).   

I wanted to spell out in detail my route to diagnosis and how I made the disease work for me, and hopefully, make at least one person going through the journey I took see a little bit of light along the way.  

Author: Ali Maloney 

To hear more from Ali, follow his Twitter on @parsonharlequin

Photo credits: Rich Dyson Photography

If you'd like to read Ali's personal essay about Addison's disease, check out 'So Hormonal: Essays About Our Hormones’, available to purchase from Monstrous Regiment

This article was first published in the Winter 2021 edition of the ADSHG magazine.

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