Last year, celebrity businesswoman Katie Hopkins publicly announced her epilepsy. In this in-depth interview, she tells Peter Fox why she hid her condition for so long - and why she was kicked out of the army
Katie Hopkins is best known for her hard-line business tactics and her scathing remarks about fellow competitors in 2007’s The Apprentice. Having gained something of a celebrity status, she went on to appear in I’m a Celebrity... Get Me Out of Here! in the same year.
Still a successful businesswoman, Katie now works as a consultant to a variety of companies and organisations. She has accomplished a great deal in her 35 years, in spite of keeping one particular difficulty a secret until 2009. Katie has epilepsy – and it took several years of life experience before she felt able to be honest about it.
Katie says: “I was about 18 when I developed epilepsy. I started with absences – I’d just disappear into myself and then come back. Invariably someone would be looking at you strangely!
“I was clearly having absences, but it wasn’t labelled ‘epilepsy’. I did go through several tests, but there was never a definite result. I was reluctant to accept the label ‘epilepsy’. There was also some reluctance on the part of the doctors to give one if it wasn’t definite. I wasn’t officially diagnosed until three or four years later.”
Many readers will be familiar with the worrying wait to have seizures diagnosed and with the educational issues that surround recurring seizures. At this point, Katie was heading off to University in Exeter – where seizures in class could undermine her ability to learn. Not only that, but Katie worried that her seizures simply made her appear strange to everyone else.
She explains: “I was having six or seven absences a day. It was a pretty tough thing, bearing in mind that university is one of those places where you want to fit in. I could be walking through the door of the lecture hall and I’d just go. And then, people are looking, thinking, ‘Who’s the odd kid at the door? Why is she not moving?’ It’s horrible.”
Don’t treat me this way
During her second year at university, Katie finally received some explanation for what she calls her ‘little trips’. Unfortunately, a diagnosis of epilepsy did little to make her feel better – particularly coupled with the uncertainty of whether her seizures would be controlled by medication.
She says: “I felt worse in some ways when I was diagnosed. I never thought of myself as ‘epileptic’ or odd – which is pretty much what people think, isn’t it? That epilepsy equals odd. That’s harsh, but true. I think many people have the same preconceptions – that people with epilepsy fall on the floor and froth at the mouth. “
Also, my doctor pretty much said to me, ‘You’ve got epilepsy. You can try this range of drugs and if we’re lucky one of them will stop it.’ When a doctor says that to you, it’s not terribly reassuring.”
Katie was started on carbamazepine. She was less than impressed with her treatment, however – finding the side-effects of her anti-epileptic drugs (AEDs) troublesome.
Katie continues: “I started with carbamazepine and we kept upping the dose. But it left me feeling dizzy and sick, so I stopped taking it. It didn’t seem to be doing anything – I still had my absences. Now I’m older and wiser, I can probably say I didn’t give it long enough. I probably only waited three months.”
Katie is not the first person with epilepsy to take the decision not to keep up with her treatment regime. Although it may seem a simple decision, drugs should never be stopped without speaking to your doctor. Being fiercely independent, however, Katie didn’t trust her clinicians enough to ask them about the side-effects of her medication, or about alternative drugs. She went unmedicated for several years – but still got through her degree.
Katie says: “I had absences all the way through university, but somehow managed to get through it. I had a really ‘normal’ time at university. I lived with great housemates. I remember it very fondly.”
In the academy
As a champion of the British military, Katie’s ambitions had always been to join up. While still studying at Exeter, Katie had been accepted at the prestigious Royal Military Academy Sandhurst. This is the facility where officers begin their training and is a self-professed ‘centre of excellence for leadership’.
Katie explains: “All through university, I’d been going to the army and I’d received my intelligence corp bursary. I am really passionate about the forces. I kept my epilepsy a secret at Sandhurst. I had to do that – because people with epilepsy aren’t allowed in the army.
“I don’t agree that people with epilepsy are not allowed to serve under any capacity. I appreciate that you may not be able to carry a weapon and you may not be able to go on a tour of duty. But many people are very well medicated. I was qualifying into the intelligence corp, so there’s no way I couldn’t serve in some office-based intelligence role.”
Katie buckled under and continued with her education. Then, during the summer break after her first year at the academy, Katie’s seizure pattern changed. Her seizures became much more severe during one worrying moment in the middle of the night.
Katie continues: “When I had my first tonic-clonic seizure, that’s when my epilepsy became really alarming. With absences, people are looking at you and you know you have to get on and act normal. But if you have a tonicclonic... I remember the face of my boyfriend at the time. He was so afraid. I’d broken my back. I couldn’t move properly. But it’s the look of fear in his face that I remember.”
Katie spent the rest of the summer trying to deal with her injuries before returning to Sandhurst. She continued her career at the academy, still trying to cover up her seizures – which were now happening largely at night. Ultimately, she was unsuccessful. At the very end of her three years at Sandhurst, it became clear that Katie would not be graduating into the army. This was a crushing disappointment – particularly given the punishing programme she had endured.
“We started as 32 girls,” Katie explains, “and at the end there were eight. I had got through the academy, only to be told ‘no’ at the end. The look on the face of the chief medical officer was awful. Somehow, he’d got hold of my medical records. He looked so pleased that he’d found me out.”
Despite being unable to graduate from the academy, Katie was at least permitted to celebrate with her friends and colleagues on the night of graduation. She says: “To graduate from Sandhurst they have this massive parade, it’s a really big deal. You march around the parade square and up the steps of the academy. At the top of the steps, everyone else turned right. I turned left. They let me go as far as appearing to graduate. But at midnight everyone else removed the covering from their pips. I wasn’t allowed to.
“The way they treated me was pretty strong. But from their perspective, I’d cheated the system – and I deserved to be chucked out. I see their point of view – but I think my point of view is better!”
Having lost out on her life’s ambition, Katie had to completely rethink the course of her career. She returned to the jobs market and attempted to create opportunities with the skills that she had learned. These skills lent themselves easily to the world of business – where Katie is now a successful career woman. But for years, she continued to conceal her seizures out of fear that she would be discriminated against.
She explains: “I thought that people wouldn’t choose me for a job, they’d just select a candidate without epilepsy, so I still hid it. I only had seizures at night – so I could hide it quite easily.”
Like many people living with the condition, Katie Hopkins was sure that the stigma surrounding epilepsy would make it more difficult to find employment. As a result, Katie felt obliged to spend most of her life concealing it. Trying to carve a career in the world of business, she felt that her epilepsy would simply be considered a weakness.
Katie explains: “If 10 of you were going for a job, why would you disclose a weakness? I sometimes wonder if a person with epilepsy ticks the disability box, they might get a job through positive discrimination. However, I don’t know how that works – and frankly I think that’s a weird way to qualify for a job!”
These fears about her seizures – and the barrier they may present to employment – were not completely unfounded. Katie spent her young life determined to join the armed forces and battled her way through the famous Royal Military Academy Sandhurst. She was not permitted to graduate, however – purely because of her epilepsy. She turned her attention instead to the business world – where she still operates as a valued consultant.
Katie continues: “I’m brought in to be fairly hard-nosed and ruthless, to make efficiency savings and deliver profit. I love it when I’m working really hard and feeling powerful – not in terms of having power over people, but feeling empowered in myself. I enjoy that – feeling tough. I don’t like weakness, I don’t think any of us do. “
Many readers may understand Katie’s experience of her seizure pattern – which has continued to change throughout her life with the condition. Fortunately, the impact on her career has been limited by the fact that she now experiences seizures only at night.
She explains: “I’ve gone through all these different phases with my epilepsy. I’ve had absences and tonic-clonics and then I’ve had these latest ones, where I don’t have seizures during the day. I have four or five seizures a night, lasting about a minute. I have convulsions, but I also shout things like, ‘It’ll be alright!’ I get this big positive shout on, which is bizarre! I come around and sometimes I can even hear myself shouting. It’s an odd side of my epilepsy.”
Don’t mince words
Disappointed that a career in the military had proved impossible, Katie only became more determined to succeed in the business world. Her ambition led her to apply for BBC’s The Apprentice in 2007. Katie’s sleep seizures and shouting episodes had been relatively easy to conceal when she was based in a conventional working environment. The Apprentice, however, was anything but a conventional working environment. All contestants were required to share bedrooms.
Katie added: “I didn’t disclose my epilepsy when I applied for The Apprentice. Ten thousand people apply for that show. With 10,000 rivals, I wasn’t going to shout, ‘Yoo-hoo, I have epilepsy.’ In The Apprentice, I always imagined the house to be quite glamorous, but it’s not. I was in a bunk bed in a room full of six people. When I arrived I thought, ‘Oh, bugger...’”
Katie admits. “I always imagined the house to be quite glamorous, but it’s not. I was in a bunk bed in a room full of six people. I was shouting out and I think I even fell out of bed once or twice. I’d just say I’d had a funny dream! Fortunately, no one ever complained because everyone was so knackered that they slept like demons, so I got away with it. That’s such a weird thing to say, isn’t it? ‘I got away with it’. Epilepsy isn’t a crime, is it?”
The brutal honesty with which Katie described the performance of her fellow The Apprentice competitors made her something of a celebrity. She became the kind of woman we love to hate – while secretly we’re all a little jealous. Wouldn’t all of us like the chance to tell a few carefully chosen people exactly what we think of them...?
Katie says: “It’s no good being soft. I’m naturally stronger in terms of my work – and probably on The Apprentice that went a little bit further. A lot of the people on that show weren’t very good at what they were doing – and I was able to tell them that they weren’t very good at what they were doing. That’s a strong thing to say and isn’t very British – but I think it needed saying. But yes – I think I potentially came across as a bit of a hardnosed old cow.”
Katie made it all the way to the semi-final of The Apprentice – only to decline a place in the final. She is the only contestant ever to walk out on the infamous Lord Alan Sugar. Despite this early departure, Katie’s five minutes of fame were not over yet. During the same year, she capitalised on her new celebrity status and accepted an invitation to work in Australia. This sounds like the high-powered and glamorous life of a celebrity businesswoman. It wasn’t. Fearless as ever, Katie ventured into the jungle on I’m a Celebrity... Get Me Out of Here!
“I did not disclose my epilepsy when I went for The Apprentice, but when I went for I’m a Celebrity... Get Me Out of Here! I did. I had to, because somehow they’d got hold of my medical records. Fortunately, my seizures were never shown on telly. They never show that much night-time stuff, because everyone’s sleeping.”
Compared with a bunk bed in The Apprentice, living in a jungle camp was almost certainly a more dangerous prospect for someone experiencing recurring seizures. This time, Katie wouldn’t be falling out of bed, but out of a hammock. To make matters worse, Katie’s seizures went through a particularly severe spell while she was there.
Katie explains: “I’d had to get my neurologist to tell them that [my epilepsy] would be okay. But actually, it wasn’t very okay. They were going to pull me out of the jungle because my seizures were so bad. The onsite medic wasn’t too happy. It’s a good thing I got kicked out when I did. The public kicked me out – but the medic said that if they hadn’t, he would have kicked me out the next day.”
A pregnant pause
Although Katie is best known for her business tactics (and her sharp tongue), she is very different in person than she appears on television. She explains: “The other side of me, behind closed doors, is a wife and a mother. My partner is amazing and is really supportive. I have three children under six, so there has to be a softer side there. But being tough helps you deal with some of the tough stuff you have to deal with when you have epilepsy.”
Katie is certainly no stranger to the impact epilepsy can have on family life. Even before she had her own family, her seizures had a lasting impact on her parents. She says: “My parents won’t accept my seizures at all. My dad won’t talk about it and my mum gets upset. They just don’t want to deal with it – it just upsets them. I wish they wouldn’t feel responsible. I get a lot of emails from parents whose children have been diagnosed with epilepsy. I think epilepsy is really hard on parents.”
Having accepted the impact that epilepsy had on her parents, several years later Katie was forced to see things from another perspective. Katie’s first child was unplanned. This meant that her epilepsy – or, more to the point, her medication – might have an unwanted impact on her own children.
Katie explains: “When I had India, I didn’t even know for the first five or six weeks that I was pregnant. I was on carbamazepine at that point. I read that you should be on folic acid – and quite a high dose, because it would need to counter the effects of the carbamazepine.”
This is just one of the reasons that women of child-bearing age should always have preconception counselling. Anti-epileptic drugs (AEDs) such as carbamazepine may reduce levels of folic acid in the body. Folic acid is important to the healthy development of a baby – which meant that Katie’s medication represented a risk to her child.
Katie continues: “They do various scans to measure the size of the baby’s head and the different organs. India’s kidneys were five or six times bigger than the biggest measurement they should have been. They said there was something wrong with our baby and that we shouldn’t have her. I had this sense of blame that it was because of my medication and that it was my fault. I thought I’d damaged her. It was awful – they started discussing termination at eight months. I mean, eight months! “
Despite fears that India may not survive, she was born healthy and is now six years old. Since India’s birth, Katie has had two more children – both planned pregnancies that were much less worrying than her first. Settling into family life, Katie tried to balance her home life with a successful career – and continued to hide her epilepsy. But this finally changed in 2009 – when Katie told the world about her condition.
Honesty is the best policy
“I can’t remember what the trigger was now. I think someone approached me on matters of health to see if there was a story there. There does come a point when you realise you’re still hiding this. I decided it was time to stop lying and just say, ‘I have epilepsy.’”
Katie publicly announced her epilepsy in a Daily Mail piece during National Epilepsy Week in 2009. She explains: “I thought that maybe it would be useful to a few people that read it. And it has been. It’s been great in many ways, going and meeting people with epilepsy. I’ve had a massively positive response. Loads of people have made contact with me. Being able to natter to other people who get it, who understand – that’s important.
“I’ve had some criticism, of course,” Katie continues, “from people saying I’ve just used my epilepsy as another form of selfpromotion. I think this would be a slightly odd way to promote myself, but that’s been the downside of ‘coming out’ about my epilepsy.”
It is something that many people with epilepsy want to see – more people in the public eye who are honest about living with the condition. Epilepsy-related stigma is reducing year on year, but the going is slow. If celebrities were honest about having epilepsy, they may succeed in showing the general population that epilepsy isn’t as scary as they might think. So: did Katie’s announcement spark a trend of celebrities speaking out about their health conditions...?
Katie says: “In the entertainment industry, there are people who’ve told me they have epilepsy – but they would never come out about it. They think it would damage their ability to secure work, or it doesn’t fit with their profile. I think the biggest problem is the lack of willingness to talk about it in any way – that only continues the stigma.
“The stigma is still there. I don’t know how we make that go away. I still have to get up and have five seizures a day. I’ve been thrown off trains and out of cabs. You still have to deal with the things that happen to you because you look like you’re drunk or on drugs or whatever people think. We’ve got a long way to go before epilepsy is accepted as normal.”
Katie seems like a very remarkable person. She is nothing like I thought she’d be. Several of the experiences she has told me about were evidently very difficult for her – both difficult to live through and difficult to tell me about. But she has answered my questions with remarkable honesty. As I ask her about the future at the very end of our interview I realise I have quickly come to admire her strength. Particularly as she tells me about the most recent phase of her changing seizure pattern.
Katie explains: “I’ve started dislocating. About two months ago, I dislocated both shoulders. My doctor just told me to take some paracetamol. Finally, we worked out that my arms were dislocated, so I was taken to A&E to have them relocated. But when you’ve dislocated once, the tendons are gone – so it happens quite a lot now. It happens at four in the morning, I go to A&E to get my shoulders relocated and get home about 8am to get the kids’ breakfast.”
Demonstrating a keen sense of humour and an incredible spirit, Katie says this with a smile on her face. She continues: “Obviously, dislocating is remarkably painful. But I don’t think there’s any option – you have to laugh at yourself a bit!”
Such severe seizure experiences undoubtedly make it difficult to get on with normal family life. Understandably, Katie is seriously considering surgery to stop her seizures for good. She explains: “I went and had the appointment to discuss the operation. We’re talking full-on brain surgery. They take the top of your head off and use electrodes to find the epileptic focus in your brain. They do that while you’re awake.”
During surgery, a surgeon has to protect the precious areas of the brain – the bits that allow you to speak, for instance. The best way to avoid these areas is for the person with epilepsy to be awake during surgery. That way, they can tell the surgeon exactly what they feel. Awake surgeries are not uncommon. At this point, I realise that I have not looked quite as horrified as Katie expected.
“You act like that’s normal,” she says to me, “but for me that’s freaky territory. I’m not the kind of person who gets scared!”
Whether Katie decides to go through with her surgery – and whether she will succeed in becoming seizure-free – remains to be seen. But she is certainly a strong role model for anyone with recurring seizures – forging ahead with her life and limiting the negative impact of her epilepsy as much as she can. Katie concludes: “My future will just mean more of what I’m doing now – which is commercial consulting with businesses and trying to help them be more profitable. At home, I hope to see more of my children and be something of a mum to Max, India and Poppy. I’ll just carry on carrying on. And if I can get rid of this bloody thing, then I damn well will.”
Editor's note: Epilepsy Action would like to clarify the legal issues surrounding hiding your condition when you apply for a job. You are not legally obligied to disclose your epilepsy in this situatuon, unless your epilepsy would affect your ability to perform your job role.