Epilepsy is a disease that affects the brain, and has a very physical manifestation.
But it is vital that doctors treat patients holistically, says specialist psychiatrist Dr Lavinia Lumu, as physical diseases often have debilitating psychological impacts.
Epilepsy is a disorder of the brain that affects approximately 65 million people worldwide. It is characterised by recurrent seizures, that may involve the entire body or one part of the body, and in some instances, is accompanied by loss of consciousness.
There are many different types of epilepsy, and although the disease manifests differently in different patients depending on both type and severity, there is one common thread – it is classified as a chronic condition, which means that it requires on-going and consistent management, often extending over the patient’s entire lifespan.
Another less well-known commonality is that people diagnosed with epilepsy are at a higher risk of developing a range of psychiatric disorders.
It is estimated that 20 to 30 percent of patients diagnosed with epilepsy suffer from psychiatric disorders as a direct result of this chronic disease, with disorders ranging from anxiety and depression to psychotic disorders,” says Dr Lavinia Lumu, a specialist psychiatrist at Akeso Clinic Randburg.
Being diagnosed with a chronic disease – such as epilepsy – has been compared to being issued with a life sentence. Recent research tells us that 60 to 70 percent of people diagnosed with epilepsy may gain control of their seizures after a number of years, through a combination of medication and lifestyle changes.
But despite the advances of modern medicine, approximately 30 percent of people diagnosed with the condition live with uncontrollable seizures, because no available treatment works for them.
In addition, although many patients may experience periods of remission, relapse remains a very real – and likely – possibility. The burden of living with a chronic disease – and the stress associated with learning how to manage it – can have a heavy emotional and psychological toll.
Dr Lumu explains that many people with epilepsy experience daily anxiety associated with the fear of having a seizure – in a public place that could lead to embarrassment (many people lose control of their bladders while having a seizure), or possibly alone, where no one can help them, or worse, in a situation where they endanger their own life, and even the lives of others (if, for example, they had a seizure while driving).
This fear – if left unchecked – can snowball into an anxiety disorder. The condition can also result in voluntary or sometimes even involuntary exclusion from social activities – either due to the fact that certain activities could trigger a seizure (seizures can be triggered by flashing lights from something as simple as watching TV), or because people who don’t understand the disease are wary of engaging with people who have epilepsy, for fear of triggering a seizure.
This disengagement can lead to isolation, and depression. “But the biggest concerns from a psychological perspective are denial and stigma, because this can cause non-adherence to medication and poor seizure control, which in turn, can impact heavily on social, occupational and academic functioning,” says Dr Lumu.
For this reason, Dr Lumu believes that many patients could benefit from a more holistic treatment plan, which includes psychotherapy, to help them deal not only with the initial diagnosis, but also the daily and on-going management of the disease.
“Currently, psychotherapy does not form part of the routine treatment plan of patients diagnosed with epilepsy. The doctors who make the diagnosis often counsel patients and provide information about the disease as part of the patient’s psycho-education.
“Although routine psycho-education will suffice in most cases, psychotherapy can play a crucial role in helping patients accept and understand their chronic illness, which will in turn result in better compliance and control of the disease. It can also be used to great effect in helping patients manage their stress as well as develop coping mechanisms that will help them on a day to day basis,” she says.
She concludes it is crucial that patients and loved ones do not under-estimate the psychological impact of being diagnosed – and living – with a chronic disease.
“A large population of patients with epilepsy have underlying psychiatric illnesses that need treatment not only in the form of psychotherapy, but also sometimes psychiatric medication. In these cases, a multi-disciplinary approach and liaison between neurologists, psychiatrists and psychologists is essential.”
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