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'I spend my savings just to survive. People think I’m exaggerating.'

For years, Chloe Sargeant felt as if she was shouting into a void. Desperate to be heard, to be taken seriously.

Doctors dismissed her as "hysterical". "Overdramatic". Told her it was in her head.

Meanwhile, sometimes her pain was so severe she couldn't leave the house.

It took more than a decade for Chloe, now 33, to finally get an answer: fibromyalgia.

"The way I describe it is like as if you've had a really severe flu and that aching feeling you get throughout your entire body, that's how I feel every day," she told Mamamia.

Chloe recently shared her story on SBS Insight during an episode exploring invisible illness. And that's exactly what fibromyalgia is — a chronic condition you can't see, but one that affects every part of a person's life.

Chloe Sargeant on the cost of invisible illness. Post continues after video.


Instagram: @insightsbs

Chloe's journey to her diagnosis was "deeply distressing".

There's only so many times you can be told, "You're fine," when you know something is wrong.

"It's exhausting," she said.

"We're still called hysterical. I keep going to doctors and saying, 'No, something is definitely wrong. I know that nothing showed up in my blood, but something is wrong' and just being told 'no' over and over again.

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"You end up kind of feeling like you're going crazy."

So, when Chloe finally got her diagnosis, it was bittersweet.

"After so many years of being gaslit, it's like I'm so happy to have a word, but at the same time, I've just been told that I have an incurable illness that I'm never ever going to not have."

The hidden burdens.

Chronic illness doesn't just affect your body. It leeches into everything — your relationships, your work, your finances.

For Chloe, it's meant making impossible choices.

"My body is my savings account," Chloe said.

It's a line she's used before, but it never gets less powerful.

"Whenever I show friends that don't have chronic illness and anyone able-bodied, how much I will spend on a monthly basis … They'll be like, 'You cannot be serious. How are you affording this?'"

Her answer? "There's no other choice."

Because the alternative is unmanageable, unrelenting pain.

"I have to choose between going to the dentist or going to a psychologist sometimes," Chloe said.

"I'm constantly managing it and it is exhausting and it is frustrating.

"When I sort of give people an overview of that from a financial perspective, they genuinely are like jaw on the ground."

But the costs aren't just financial. Chloe has lost friends. She's lost partners.

And while she understands why some people find it hard to stick around, she wants them to know one thing: people with chronic illness are tired of it, too.

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"We are just as frustrated as you, if not more," Chloe said.

"We are frustrated that we can't go to that event and we have to cancel at the last minute.

"We are frustrated that we haven't gone on a date in months because we're having a flare-up. We are frustrated by not having the social lives and doing a lot of the things that we imagined our lives were going to have.

If there's someone in your life living with chronic illness, Chloe has one simple request: don't jump in with advice, just be a friend.

"Sometimes when I'm having a bit of a rant about chronic illness, all I want you to do is just sit there and listen and then turn around to me and just go, "Oh my god, that f***ing sucks," she said.

And if you're not sure what to say? Just ask.

"If you ever have questions about chronic illness, chances are they will be willing to answer them for you. They'll probably be really happy that you are asking rather than giving unsolicited advice or telling you what they think is best for you."

Her message is clear — and powerful.

"Disabled people are absolutely incredible.

"I'm surrounded by chronically ill and disabled people in my life. And I'm always amazed by how strong and talented and resilient they are.

"We make the world better, so just don't discount us."

Watch Chloe's story on SBS Insight: Invisible Illness on SBS On Demand.

Feature image: Supplied.

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