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Five years to get a diagnosis? We have to do better.

What’s it like to speak to a doctor and realise they’re as clueless about what’s wrong as you are? It’s a feeling that Charly Cox knows only too well.

For years as a teenager she sought help for what she now knows to be the symptoms of bipolar disorder, but was met again and again with blank looks and confusion.

“As a teenager, to look into the eyes of an adult and see them looking back at me in the same way I was looking at them – to see they were just as petrified of the situation as I was – was terrifying,” Charly says.

“You want answers, but instead you can see someone realise they have a responsibility to deal with something they don’t understand. I could see doctors thinking: ‘You’re right, there is something wrong, but I don’t know how to handle that for you'.”

Charly’s story sums up so much of why research into mental health is desperately needed. Convinced something was wrong, she kept asking for help. But our lack of understanding about what causes mental illness - and how we should respond - led to years of contradictory advice, failed treatments and missed chances to provide real help.

Belittled rather than listened to

When Charly was 15, a series of panic attacks left her feeling anxious and alone. A friend eventually convinced her to go to a doctor, which in itself felt like “the most difficult and frightening step to take”. But rather than trying to understand the roots of the problem, the doctor blamed Charly’s panic on puberty.

“It was immediately just shrugged off as hormonal,” she says. “There was a sense of: ‘You’re a teenage girl, you’re going to get these feelings, you’re probably being a bit overdramatic’.

“I’d built up the courage to ask a doctor to consider that there was maybe something wrong with me, and I was totally shot down. I was made to feel like a silly little girl.”  

As the months went on, Charly’s mental state only got worse; even getting out of bed became a major struggle. She went to see another doctor, who this time put her on a waiting list for specialist mental health support. “There was no real diagnosis at that stage though, no science,” Charly says. “Just a sense of: ‘we’ll put you on a list’.” 

“I became a complete shell of myself while I waited to get help,” she adds. “I was withdrawn, terrified of everything, incredibly anxious. I was this high-performing girl who was supposedly Oxbridge-bound, but couldn’t face talking to anybody.”

A first diagnosis

After four months of waiting, Charly finally saw a specialist, who diagnosed her with post-traumatic stress disorder, anxiety and depression.

“It was incredibly overwhelming,” she says, “to be sat at 15, on my own, and have these odd pieces of terminology thrown at me which I absolutely didn’t understand, when five months earlier I’d been told there was nothing wrong with me.”

What followed was Charly’s first experience of the treatment merry-go-round – based more on hope than expectation of success – that so many people with mental illness are forced to endure.

It was also clear that her symptoms weren’t improving – far from it. “I remember going to a GP and saying: ‘Things are getting worse but they are also getting different’. I told her I was struggling to sleep and that my moods were changing, and she said, almost off-hand: ‘Oh, that sounds as though it could be bipolar’.

“The way it was handled was incredible. I was told I had five out of the seven main symptoms, but that we couldn’t really look into that more or diagnose bipolar because I was young.

“Imagine being told you have five out of the seven main symptoms for a brain tumour, but your doctors aren’t going to look into it! It just would not happen.”

The doctor who wouldn’t take bipolar seriously

At this stage Charly visited another doctor for clarification, and couldn’t believe the response she got. “I said: ‘I’m here to follow up the idea that I could have bipolar,’ and she actually laughed. She said: ‘No I don’t think you’ve got bipolar,’ like it was the funniest thing in the world. It was incredibly patronising."

“I think part of the problem,” Charly adds, “is that if you can articulate how you’re feeling in a very sane manner, that almost counteracts any of the symptoms you’re trying to explain. I felt judged on the way I could describe what I was feeling, rather than there being attention on a potential chemical imbalance in my brain or on any kind of serious medical evaluation.”

Eventually Charly became so desperate for answers that she paid to see a senior consultant. Within a few minutes, he said he was confident she had bipolar disorder type II. “I’d only had to wait five years for someone to actually give me a diagnosis that seemed to make sense."

Trial-and-error drug treatment

After that came a stream of medications, but no clear plan. “It was a case of: ‘Here’s an antidepressant, here’s a beta blocker, here’s an anticonvulsant. Try these and come back in six weeks,’” Charly says.

“But nobody properly explained why I was being given them, what they would do or what the side effects would be. Nobody said: ‘This will make you sleep’ or ‘This will make you fat’ or ‘This will stop you being as articulate’.

“I became a completely different person, and I was constantly so frustrated because none of these things were working. There was never any rhyme or reason to what I was being given: no sense of trying new medication because my doctors understood what it would do.

“And at the same time I was constantly getting conflicting information. I was told things could better or worse as I got older. It was suggested this might be hereditary but also it might not be. It’s so frustrating!”

Why Charly is swearing with MQ

All over the world, huge numbers of people are forced to face the same appalling situation Charly faced: doctors without answers, treatments without logic, suggestions without evidence.

Today, Charly makes a living through poetry and her first book, ‘She Must Be Mad’ is out now. And as she continues to try and understand and live with bipolar disorder, she’s supporting MQ to help others avoid the years of frustration and uncertainty she went through.  

“As soon as I heard about MQ, it struck a chord with me,” she says. “It made change feel tangible. It’s incredibly scary that we know so little about the brain and yet we’re so nonchalant about that.

“So MQ’s work feels exciting; it’s so exciting that there are research teams working out there now that could make changes that will have a huge, huge impact.

“My experiences left me so broken: mentally broken and heartbroken,” she says. “But it’s so exciting to think that in my lifetime we could really come to understand mental illness. That’s why I’m swearing to take action with MQ.”

Last updated: 17 August 2018

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