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When pain has no physical cause: The real world of imaginary illness

We talked to Irish consultant neurologist Suzanne O’Sullivan about the issue.

YOU’VE PROBABLY GONE to visit the doctor many times in your life – and some of those times you might not have been sure what your symptoms meant.

But what happens when your symptoms are serious and debilitating, but don’t actually have a physical cause? These ‘imaginary illnesses’ – known as psychogenic disorders – aren’t unusual: it’s estimated around a third of men and women who visit their GP in the UK have symptoms that are medically unexplained.

British-based Irish consultant neurologist Suzanne O’Sullivan knows all about such illness. She works at the National Hospital for Neurology and Neurosurgery in London, and for a specialist unit based at the Epilepsy Society.

In her first book, It’s All In Your Head: True Stories of Imaginary Illnesses, she takes the reader through her journey with the subject, using the (anonymised) examples of real-life patients.

9780701189266 Source: Penguin Random House

O’Sullivan started writing as a hobby, as an escape from work, but was then encouraged to write about her experiences.

At first she was “slightly against” the idea, but soon “realised how powerful books and the media are”. She realised she could educate people about these disorders, but do it in a way that can help combat the shame involved in suffering from them.

Conflicted feelings

For although these situations aren’t rare, it’s still quite rare to hear public discussions about them. As the book shows, simply being honest about the root cause of these issues can bring about recovery in people, albeit sometimes at a slow rate. Dealing badly with the diagnosis can also lead to more suffering.

“When people are faced with all these really strange disorders, people have really conflicted feelings,”  O’Sullivan tells TheJournal.ie.

Even the nicest, most well-meaning people in the world, if they hear someone is blind but there is no physical cause for it, they have a conflicted moment where they can’t understand is that person blind or are they pretending to be blind.

It’s All In Your Head explains that it’s much, much more complicated than the idea of ‘making up’ an illness.

The patients in O’Sullivan’s book suffer real and painful symptoms, including multiple seizures. But when they are tested, the root cause is not that there is something physically ‘wrong’ with them – a man who is a wheelchair user and believes he has MS does not in fact have MS; a woman suffering multiple seizures has not got epilepsy.

O’Sullivan is very honest about her own journey with such cases, including those where she assumed a person had an imaginary illness, but was proved wrong. She also details what happened when she dealt with a woman’s situation in a way that only exacerbated things.

All these learning experiences added up to her becoming open-minded and very tolerant of people’s pain and the psychological reasons behind it. “I didn’t feel unsympathetic toward my patients but I struggled to figure out how that could happen,” she says of her early years.

But after 10 years of working with people, she says now:

The more people you meet, the more horrified you are by the degree of disability and lack of help; you see how people are suffering.

She hopes that by meeting these patients, readers can see how real and serious imaginary illnesses are.

“It’s not unusual”

She also wants to show that these illnesses are not unusual. “I was regularly encountering this – I know it’s not unusual,” she says. “I would tell people about it and they felt like they were the only person in the world that this had happened to.”

She says that the impression is formed that this is rare because people don’t talk about it.

“I can understand why people who suffer from it don’t talk about it,” says O’Sullivan. For one, it’s hard to explain to people – but also “maybe nobody considers it their speciality” in the medical arena.

shutterstock_407170774 Source: Shutterstock/Africa Studio

When O’Sullivan qualified in Ireland, every neurologist had an area of speciality they trained in, but practised as a general neurologist. “Now we are very, very specialised and I think this allows this to get out of control,” says O’Sullivan.

“In a sense I can say to people ‘I don’t think you have epilepsy and therefore you no longer fulfil the criteria for being looked after by me’,” she explains. “It allows medical professionals to say ‘I’m really sorry, I sympathise with you but I can’t find anything that fulfils my area of expertise’.

People are evading a diagnosis, because there is no real specialist doctor for dealing with these problems. Doctors are trained to look after disease. We are never told what to do when you rule disease out but this person still doesn’t feel well. It is an area we could improve on.

“The model that has been around is that a lot of these people are believed to be better suited to being cared for by psychiatrists, but that’s a very big problem”, says O’Sullivan. “If you had paralysis in your legs, or chest pain, you are not going to go to a psychiatrist. You need to have someone in the world of physical medicine.”

O’Sullivan advocates having a multi-disciplinary team for cases like this – but also thinks there should be more of an emphasis on psychogenic disorders in medical school.

The last hidden mental health problem

The last few years have seen more of a discussion taking place around mental health issues, and O’Sullivan hopes that this could pave the way for more honest talk about psychogenic disorders.

“This is the last hidden mental health problem in a way, and I think there is a reason for that,” she says.

If your emotional distress comes out as a physical symptom, it doesn’t want to be talked about; it doesn’t want to be shown to the world.

“It really isn’t a problem of doctors and health services only, it is a societal problem, I think,” she says.

“I am trying to say we all get versions of this. So if we could accept that it is a normal part of life and some people get it worse than others and it is just illness, [that would be positive].”

Her book – which is nominated for the Wellcome Book Prize – has struck a chord with people affected by these illnesses. She gets emails and letters “all the time” from people who tell her that just being able to acknowledge what is going on has helped them.

She has seen this herself – when you help the person make the connection between their psychological state and their physical symptoms, change occurs

Alienated by a diagnosis

Acknowledging the issue is what makes a big difference, but it has to be done sensitively.

“If you tell people their seizure has a psychological cause, if you do it badly, basically they will be immediately insulted by the diagnosis and alienated by the diagnosis and they will struggle to get help again in the future from other doctors.”

But if you do it well, you will “completely allay their fears”.

“It’s a hard diagnosis to hear,” says O’Sullivan. “But if you do it well, just telling someone in a way that says to them ‘you are suffering, this is a real disorder, I hope we can do something to make you better or hopeful for the future’ [can result in change].”

She met one patient when she was having  100 seizures a day. After discussing the diagnosis, that dropped within a week to 10 seizures a day. “I wouldn’t like to say it always goes that way,” says O’Sullivan.

It is also devastating to hear that someone may have been sick for years with such an illness. “Their whole lives, relationships with their partners, family… after [many] years they all revolve around who does the looking after and things like that. It’s a really big thing if someone who has been sick a long time, to try and deliver the diagnosis so they don’t get really upset.”

She doesn’t think that these cases have increased due to self-diagnosing online. Towards the end of the book, O’Sullivan also discussions the notion of ‘hysteria’, as diagnosed by Freud, and the gender issues surrounding imaginary illnesses.

O’Sullivan says she has never felt judgemental about people with these illnesses – even in cases of paralysis, where in ‘distracted moments’ she has seen patients move their legs.

“I just assume no one is faking,” she says. “You don’t go to a doctor who specialises in epilepsy and then fake a seizure. It is such a genuine cry for help.”

It’s All In Your Head, which is published by Vintage, is shortlisted for the Wellcome Book Prize. The winner will be announced on 25 April.

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