Fighting for inclusion while living with Fibromyalgia

Issy Hamlett on living with Fibromyalgia

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Fighting for inclusion while living with Fibromyalgia

Living with Fibromyalgia


This episode of  Our Voices introduces Issy, a woman who is living with Fibromyalgia. She has a powerful imagination but has struggled to find her place in society.

Being different

Long before discovering that she was living with Fibromyalgia, Issy always felt herself to be different to others. One of the things which has distinguished her from other people is her propensity for mimicking sounds.

For example, if a seagull chirrups within earshot, her immediate response will be to squawk back. This instinctive response stems from a condition named echolalia. In Issy’s words: “It’s just so… it’s so bizarre. I don’t understand why I do it. It’s just a form of communicating.”

Living with disability: Issy's story


A powerful imagination


And then there is Issy’s imagination which, at the age of 8, gave birth to a three-wheeled clown car. “It had these sunflowers that squirted water coming out the wing mirrors. It was brightly coloured and had reds and greens and yellows and purples, like all the colours of the rainbow on it”. 

Describing the clown inside, she says “He wore high heels, and he wore a tuxedo jacket. And he had a top hat on. His face was human-like with wolf ears. He would drive around all day in his car. And he would beep at random people to come and join them on the weird car brigade.  And all of these people, they made their own cars. Some people had big giraffe looking cars that are really tall, like something you’d see Jeremy Clarkson make on top gear. And then other cars had these weird spirals coming from them.”

Wanting to be accepted


As you can imagine, Issy’s stories made quite an impression on her classmates but it wasn’t always a positive one. She describes how, while she wanted to be accepted, children would tend to keep away from her, which would cause childhood stress. “I wanted so badly to fit in. Because when people see that you’re different and treat you differently, they make you feel like you don’t belong to something, or you shouldn’t be the way that you are.”

Issy got involved in different activities to cope with being an outcast, for being different.


Pursuing her hobbies

In spite of Issy’s feelings, she didn’t allow other people’s perceptions to stop her from doing the things she enjoyed. She threw herself into drama clubs, dance competitions, swimming sessions and began taking horse riding lessons. 

She would make funny faces and noises to make her friends laugh and she also became a fierce protector of her friends when she felt they were being bullied. But this had a consequence. “Because of that, I made myself a target. People knew that they could tap into things that I was so insecure about.”

Experiencing bullying

Issy began to experience direct forms of bullying herself just for being different. She was called names and spat at. Some kids would even follow her home.

“I’d feel like such an outcast and an outsider that I became so angry.  I kept on wondering ‘Why me? Why do they treat me like this?’ ”

Acting out

In reaction to this, Issy began acting out, which only intensified the hostility against her. It was clear that the people around her just didn’t understand the suffering that Issy was experiencing. Talking about how people who experience life differently to others react, Issy says 

“We’ve tried to express how we feel through negative emotions, through feeling sad and crying and being upset. But in the long scheme of things, it doesn’t work and people don’t recognise that the way we behave is because of how we feel.”

Horse riding was one of the things that helped Issy with her childhood stress


Experiencing physical symptoms


As Issy became a teenager, her focus shifted from trying to fit in, she wanted people to accept her for who she was. The trauma of being misunderstood and ostracised began to have physical manifestations.

“At the age of 17, 18, I began to experience body and joint pain and extreme fatigue… and began to experience stomach problems and migraines.”

Pushed to drastic action

Issy went to see her doctor about these symptoms, he recommended her to speak to a clinician. But Issy was living with chronic pain. This eventually led to Issy taking a drastic action because she felt like no one understood her.

 “Just the weight on my shoulders was so intense that the only way that I could cope with it was to hurt myself. And there was one point in time where I ended up in hospital because I overdosed.”


Discovering a diagnosis


Following this, Issy realised that she needed to actively work out what was causing her to feel so bad. After a great deal of research and study, Issy returned to her doctor armed with facts about her condition. This led to her finding out that she had been living with Fibromyalgia

 “which is a chronic pain condition that is characterised by the way that our nervous system reacts and adapts to different things. And, one day, I can be experiencing such an immense amount of pain that I can’t get out of bed, but the next day, I can be feeling better.”

Struggling to work with Fibromyalgia


Knowing that she has been living with Fibromyalgia has helped Issy to manage her life much more successfully. Now, if she needs to cancel plans or take time off work due to illness, she understands why and she can make the best decisions in the interests of her health. Yet other people have not always been so understanding about Issy’s Fibromyalgia pain.

 “I’ve been in situations in previous job roles where I’ve been threatened with being sacked because I needed a day off here and there, or I needed some reasonable adjustments to be put in place… And at that moment in time, you feel so lost, and you feel so… so vulnerable. And you feel like the power that you have as a person has been diminished by the things that we can’t help as people with disabilities.”

Issy's fur baby who helps her during the times when he fibromyalgia pain gets worse


Fighting for inclusion


Issy has experienced a lot of emotional stress due to having Fibromyalgia. This has made it clear to her how unfairly and unacceptably people with disabilities are often treated by society. As well as living with Fibromyalgia, she has also experienced discrimination as a queer female.

As a result, she describes fighting for greater inclusion and diversity in society as being her “passion”. This was something that motivated her to apply for a position as a diversity and inclusion assistant. They asked Issy what she was proud of during the interview. In response:

 “I sat there, and I just cried. I said, I am just so proud of myself, that I have been able to ignore my inner saboteur and my inner demons and that I’ve got myself to a position where I can be interviewed for a job role that I am desperately wanting to do, and a job where people are gonna listen to me. And I’m going to be able to impact other people’s lives and make a difference and make a change.”

The passion that Issy felt clearly came across to the interviewers. She secured the role less than an hour after the interview had finished. 

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Laura is the mix engineer for the Our Voices podcast. She has a BA in Music from Nottingham University and an Advanced Diploma in Music Production and Sound Engineering from Abbey Road Institute. Alongside working for Our Voices she is a freelance sound designer and technician. Her highlights include sound design for JK Rowling audiobook ‘The Christmas Pig’, and sound effects editing on The Outlaws, on the BBC.

For the Our Voices podcast, Laura is typically provided with a Voice Over and interview. She then cleans the dialogue, integrates the podcast intro and outros, chooses the music that will add to the storytelling and pacing of the episode, then bring all the elements together in the mix, followed by mastering and then delivering the final edit.

 

Experience in Industry: 3

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Favourite Food: Potatoes

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Hobby: Music

Favourite Book: Northern Lights

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I’m the community manager at Our Voices. I spend most of my time focusing on the implementation of our marketing strategy, achieving goals and KPIs, and the rest of the time listening to the amazing stories of our guests from all around the world. What I love most about working for Our Voices is the impact it has on peoples’ lives. It requires a lot of courage to tell your story out loud so I make sure these stories are heard by as many people as possible.

 

I was born and raised in Pakistan and I’ve been living in Hungary for over two years now. I have a Master’s degree in Marketing and I live for mastering the art of digital marketing.

 

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Favourite Food: Biryani – introduced by the Mughal rulers in the Indian subcontinent; this dish is an absolute delight. Also, can never say no to a good burger – extra cheese!

Favourite Sport: Cricket – I grew up playing and watching cricket with friends and family.

Favourite Show: Stranger Things – I love how an odd group of friends fight against challenges bigger than themselves.

Favourite Movie: Harry Potter – The only movie I can watch over and over again!

Favourite City: Prague – Absolutely love the Baroque and Gothic vibe of this city.

Hobby: Netflix, Travelling, and Eating- I want to try different cuisines from every country once in my lifetime!

Favourite Book: The Da Vinci Code by Dan Brown – A fast-paced thriller that keeps you hooked from the first page to the last.

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I run Fascinate Productions, the production company behind the Our Voices podcast. I’ve had a wide variety of roles in media, from underwater videography, to live televised sporting events around the world. But since listening to my first audiobook in 2016, I’ve been all about audio and jumped in with two feet. Podcasts are enabling the world to democratise its most valuable information. They’re about spreading messages, and sharing ideas, and it’s my mission to help those holding the knowledge, to distribute it far and wide.

When Alex approached us with the idea of making a short stories podcast, with a big social impact, he got our attention. As the producer of the show, I’ve heard his guests’ highest highs, their lowest lows, and the moments of change that made them who they are – it’s been a privilege helping to craft their most intimate experiences into stories for you to enjoy.

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Favourite Food: Ice cream. It’s just the greatest culinary invention.

Favourite Sport: Rugby. I played from the age of 5 until 26 when a dislocated shoulder put me out of action. Still like to watch now though.

Favourite Show: The 100 – I love those ‘what if humans nearly got wiped out?’ type shows.

Favourite Movie: Gladiator

Favourite City: London. As a country boy from Yorkshire, I never thought I’d enjoy living here.

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Favourite Book: I love to read anything business/startup related… One of the most recent great ones was Good Strategy/Bad Strategy by Richard Rumelt

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Richard Willan is the CEO of Fascinate productions, a podcast production and promotion company. Before starting Fascinate, he worked an audio engineer, mastering tracks for artists on major and independent labels.

He is an executive producer for ‘Our Voices’ where he assists with production, creative direction of the show, and marketing strategy.  

 

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Favourite Show: Succession – an American satirical drama. The character development is incredible, and the writing is top notch. 

Favourite Movie: True Lies. I find it amazing that someone who can’t act (Arni) has so many great films.

Favourite City: London, because it is a melting pot of culture and the music scene is amazing. 

Hobby: Making music, going to gym and eating out. 

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I am responsible for writing blog articles for the Our Voices podcast. I have the privilege of listening to fascinating stories on the topics and issues that are of greatest relevance to our society today. Once I’ve done this, I create articles that provide an overview and description of the conversations in order to help spread them to the widest possible audience. My job is to make these articles as engaging as the conversations themselves.

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Favourite Show: The Wire. 

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Favourite Book: “Into the Wild” by Jon Krakauer. 

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Favourite Food:  In a word, sandwiches. The possibilities are endless.

Favourite Sport: Show jumping. When I was little I wanted to be a professional horse-rider, and I still get a kick out of watching the pros in action.

Favourite Show: Fleabag: the writing and acting create a thrilling kind of intimacy I haven’t seen anywhere else.

Favourite Movie: Victoria is an incredible German thriller that’s all shot in one take – it’s a real trip. Plus it’s beautifully soundtracked by Nils Frahm.

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Hobby: exploring city streets on my bike – preferably while listening (safely!) to a podcast – is when I’m at my happiest. 

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While running Swoosh English, an online English school from 2013 – 2021, I had the opportunity to meet people from all walks of life and many of these people had incredible stories. This inspired me to start ‘Our Voices’ because I wanted to give these people a platform to share these stories with the world.

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Favourite Food: Avocados – an incredibly delicious fruit that can be used in so many dishes. My favourite is guacamole with nachos!

Favourite Sport: Boxing and football (couldn’t choose one!)

Favourite Show: 2 comedy series: Alan Partridge and The Office (UK version). I just love English humour!

Favourite Movie: Shawshank Redemption: An unbelievable journey full of twists and turns.

Favourite City:  New York – Living there for a year in 2008 changed my life. It made me believe that anything in life was possible if you want something badly enough.

Hobby: Football, boxing, reading, learning Spanish, travelling and watching fascinating conversations on Youtube.

Favourite Book: Shantaram by Gregory David Roberts – a book about an incredible journey.