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.
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.”
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.”
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.”
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?’ ”
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.”
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.”
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.