Disability campaigner Charlotte Marianne(Image: Handout)
A Northumberland woman has spoken out about years of “agonising pain” and being “constantly told” that it was in her head. But in fact Charlotte Marianne, 29, had a series of health conditions that had been left undiagnosed.
Brought up in the south-west of England, at the age of 10 she was playing hockey and sprained her ankle. But this didn’t get better. Charlotte told ChronicleLive how the injury worsened – but was never taken seriously. In the last few years, she has finally felt listened to – and lives with conditions including endometriosis, POTS, dystonia and chronic regional pain syndrome.
She said: “Initially, I sprained my ankle playing sport at school. I was just playing hockey. My leg started to swell. The GP said it was just pain, get on with it.
“But the leg started to turn purple. It took a number of years for an answer. I kept going to doctors, and they kept saying it was in my head. They said ‘oh it’s exam stress’, ‘it’s just anxiety’.”
By the age of 14 she was diagnosed with a condition called complex regional pain syndrome (CRPS), but rather than changing her life, this was something she found was used as an easy answer for doctors who, she said, continued not to take her concerns about the pain she experienced on baord. Even the NHS website itself describes CRPS as “poorly understood”.
Disability campaigner Charlotte Marianne(Image: Handout)
In Charlotte’s case, she continued to experience debilitating flare-ups of severe pain during her teens. She added: “I was in hospital pretty much from 14 to the age of 22. I was facing severe pain flare-ups, there was no trigger. It was literally agonising pain. I had to have someone help to even brush my teeth.
“I ended up being sectioned – I started to think I was crazy, I gaslighted myself, thought I just had to ‘grow up’.”
For Charlotte, the following years were traumatic – at one stage her parents were event falsely accused of harming her – but when she moved to the North East, things began to improve.
She said: “We eventually moved up to the North East and when I got here I weighed just five stone. When we got here we found out effectively my stomach was paralysed.”
Charlotte explained that she was then able to be begin recovering. She added: “When we got here, my life started to come together. I found a GP who has actually listened. They’ve been fantastic and helped me to get support in the community.”
This care helped to reduce her symptoms and improve her quality of life. But she continued to experience flare-ups of pain, now though these would happen on a monthly basis, which led Charlotte to the conclusion it could be endometriosis.
Disability campaigner Charlotte Marianne(Image: Handout)
However, she struggled to convince medics of this – until she required emergency surgery around a year ago. A growth on an ovary had “ruptured” – finally she was diagnosed with stage four endometriosis. She said at this stage she was “really not in a good way”.
Since then though, the surgery has helped to transform her life, and Charlotte explained she felt as well as she had in decades. She’s working to raise awareness of issues such as chronic pain, endometriosis and hidden disabilities – and has developed a social media following as a disability advocate.
“I’m now doing amazing,” she said. “Life has changed massively since surgery and I feel in the best place I have been. I have always felt as though I couldn’t really speak-up about my experience.”
Charlotte is speaking as part of a campaign from brand Nurofen to raise awareness of the “gender pain gap” – with new research from a survey of 5,000 people conducted in November finding that more than half (53%) of women in the UK feel their pain is ignored or dismissed by professionals like GPs.
Nurofen has a “Pain Pass” which is designed to support those suffering chronic pain to express themselves to their GP. For Charlotte it was something she found incredibly useful. She said: “It was only when I found the tool that helped my to speak up. The pass helped me work out how to move forward. For anyone who feels it is incredibly hard to speak up, it’s so helpful.
She added: “I’ve spent nearly 20 years being told my pain isn’t real – that it’s in my head, that it’s just a period and that I just had a low pain tolerance. It took emergency surgery and a stage 4 endometriosis diagnosis for anyone to finally listen.
“My message to any woman going through this is: believe in yourself, you know your body, and you know yourself. Using Nurofen’s Pain Pass helped me put into words what I’d been struggling to describe. I took it to my next appointment and for the first time, I felt like my GP actually understood what I was going through. It completely changed the conversation.”
Penny East, chief executive at women’s rights charity the Fawcett Society, said: “The Gender Pain Gap is a long-standing equality issue affecting women and girls.
“When more than half of British women continue to feel their pain is dismissed and millions are resorting to unverified sources for health advice, we’re seeing a systemic problem at play. Having our pain minimised affects our wellbeing, our worth and our health outcomes.
“The government’s renewed Women’s Health Strategy is a welcome step, but policy must be met with action and wider societal change: we need everyone from the NHS to brands to employers to confront this issue and make improvements in the way women are supported.
“Nurofen’s Pain Pass is an example of a tool that provides women with practical support to communicate their pain. We need much more innovation and education throughout the health system; women are living with the daily consequences of not being heard.”
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