Content warning: Sexual assault, emotional abuse, child abuse, trauma.

There are many invisible illnesses out there that many of us have never even heard about. People you pass by daily may be suffering in silence and you wouldn’t have a clue.

Invisible illnesses should be spoken about more frequently to remove any stigma that may surround these disorders. Helping people understand and learn about invisible illnesses or disorders is especially important for the patients as, due to the nature of invisible illness, many people respond with “But you look fine to me”.

Please do not invalidate people who are opening up to you about their illness or experience by saying “But you seem fine” or “but that can’t be true”. It is more damaging to hear those words than you may realise.

Have you ever heard about Non epileptic attack disorder (NEAD) or Psychogenic non-epileptic seizures (PNES)? Me neither! Until now. Let’s absorb some knowledge.

What is it?

PNES are classified as non-epileptic because the seizures are not caused by excessive and abnormal electrical discharges in the brain, which is the case in epilepsy. This does not mean they are any less severe than any other type of seizures. ALL seizures are dangerous and require medical attention.

“Psychological stress exceeding an individual’s coping capacity often precedes PNES/NEAD. Clinicians can find differentiating between PNES/NEAD and epileptic seizures challenging.”(Differentiating between nonepileptic and epileptic seizures, Devinsky et al., 2011).

To diagnose PNES/NEAD medical professionals use video-EEG monitoring. This must be done while typical seizures can be recorded. Video-EEG is the current diagnostic gold standard for PNES/NEAD.

Treatment

Treatment of PNES/NEAD varies depending on the individual patient and can include psychotherapy and use of medications to treat coexisting anxiety or depression.

“A therapeutic technique called Eye Movement Desensitization and Reprocessing works for some people with PNES/NEAD. More research is needed to find additional ways to treat PNES/NEAD.” –Epilepsy foundation.

Why haven’t we heard of it?

Despite being statistically as common as multiple sclerosis, PNES/NEAD can be an uncomfortable condition to speak about as it carries a lot of stigma. It is the psychogenic nature of PNES/NEAD that makes it so difficult to talk about, both for patients and doctors.

Many PNES/NEAD patients are victims of trauma and mental health conditions are still stigmatised, which is why it’s so important to open up the conversation around PNES/NEAD and all forms of mental health.

Some patients of PNES/NEAD are able to identify a specific traumatic event in their life which may have led to the seizures. Treating the trauma as well as the seizures can be a very difficult and slow process. Patience and understanding is very important for healing, both on the part of the medical professional and the patient.

Here is a story from a friend who has been diagnosed with PNES.

This story contains imagery that may be disturbing to some readers.