I have a very vivid memory of my GP saying to me: “You are mentally sick and you have to accept help to get better.” Hannah was a healthy 20-year-old psychology student living at home with her family when she started experiencing flu-like symptoms. I went to my GP and I was kind of told that viruses will just generally go, you just need to go home and rest, take it easy. Her GP thought she had glandular fever. Hannah was feeling very tired, so the symptoms fitted. But then she started to develop changes in her personality. Soon after, Hannah lost her ability to speak. I had to ask my mum to come in, sit with me and talk for me to the GP. I would kind of write down to my mum what needed to be said. Hannah was sent home with antidepressants and a referral to a psychologist. Her symptoms deteriorated, and she was soon admitted to a psychiatric hospital, where she was given antipsychotic medication. She was seen by a psychiatrist, who ordered an MRI scan. During the scan, doctors found a cyst on her brain and sent her to A&E for investigation. When I got to A&E, they reviewed the cyst and said I was probably born with it, it probably had nothing to do with the symptoms. But what they did notice was that my blood test showed I was fighting some sort of virus. More tests followed, and after three weeks, the results came back, and Hannah finally got her diagnosis: Anti-NMDA receptor encephalitis. It’s an autoimmune form of encephalitis, which is the inflammation of the brain. According to Professor Guy Leschziner, having your physical symptoms mistaken for a mental illness is not uncommon. We do occasionally see individuals with very severe psychosis and behavioural change in whom the initial diagnosis is of a psychotic illness like schizophrenia. But actually, over the course of days or weeks whilst they’re in hospital, it begins to be obvious that actually what is underlying their condition is one of these autoimmune conditions. It’s been known for more than a century that damage to particular parts of the brain and things like tumours can result in changes in personality or behaviour. But over the last 20 years or so, we’ve begun to recognise that there are a number of conditions that have an immune basis, whereby the immune system attacks the brain and causes changes to the functioning of that brain. In Hannah’s case, it took several weeks for doctors to recognise that this was a serious autoimmune condition that required treatment with very heavy-duty drugs. I was moved to neurology ward. I was completely mute and I had lost the ability to dress myself, wash myself, feed myself. So I really was trapped in my own body at this stage. Hannah underwent immunotherapy treatment and had 13 plasma exchanges – a process of filtering blood before pumping it back into her body. Although the treatment didn’t work initially, and her parents were told by doctors she probably didn’t have long to live, after two weeks, Hannah woke up. Hannah, say “Dad”. Dad. Over subsequent weeks, she learnt to speak again and walk again. She says it was like learning how to live again. I look back at the person before I got encephalitis, and I don’t really know her. I just can’t connect with that person. Five years on, Hannah has mostly recovered, though she is still on immunotherapy treatment, and that makes her more vulnerable to infections and could impact her fertility. I wish GPs would know more about encephalitis, because they’re the first point of contact for a lot of patients. I wish my GP knew more about it, so she could direct me to the right pathway. If I was to think about all the people who had encephalitis and died in psychiatric hospitals or care homes, I wouldn’t be able to sleep at night. In Hannah’s case, a physical illness, encephalitis, was mistaken for mental illness. But sometimes it’s the other way around. We know that the connection between body and mind goes both ways. Physical problems can result in psychiatric symptoms, but also psychological issues can contribute to physical disease. Professor Leschziner says he sees patients who have symptoms like seizures, paralysis and numbness with no obvious physical cause. Some are eventually diagnosed as having functional neurological disorder, or FND, which is a problem with how the brain receives and sends information to the rest of the body. We don’t fully understand what causes these conditions. It seems that anybody can be vulnerable to changes within the software that defines how our nervous systems work. We know that there are some risk factors. So stress, anxiety, depression, previous psychological trauma in particular. But ultimately, anybody can develop these functional neurological disorders. Globally, hundreds of thousands of people develop FND every year. Conditions like FND and the experiences of people like Hannah have led some doctors to believe that we need to stop thinking of mental and physical health as separate. I think we need to move away from defining diseases or disorders as of the body and of the mind. We know that actually, in almost all cases, there are contributions from both. Even in conditions that are thought to have a pure physical basis, we know that how people interpret their symptoms is important in terms of defining their quality of life and how severe they perceive their symptoms to be. So actually understanding that, making sure that everybody has access to both physical and psychological treatments is really of utmost importance for pretty much every condition that is seen by our healthcare systems, and is important for everyone.
