Xzombieful has felt quite confused by the diagnosis of NEAD. You can see the clip she has loaded on to youtube about her experience here.
Patrick says: "I have had it for 4 years now and still don't fully understand it I feel so alone. The specialist diagnosed me and since then its like I’ve been thrown on the rubbish dump and left to get on with things alone".
Anne says: ‘‘I love the diagnosis, because that means there’s no brain damage . . . it’s just psychological"
Peter says: ‘my illness was given a name and I was not alone you cannot believe how wonderful it was to hear those words.’
Jane says: ‘Though strangely enough I have been "better" since having a diagnosis is this just me being odd???’
Mary says:’ I’ve been to 6 different hospitals and 4 of them thought I was putting this on, they kept me in, did the tests and because nothing showed up they assumed I was faking.’
How should I feel about the diagnosis?
Hearing the diagnosis of non-epileptic attacks can be very difficult. There is no right or wrong way to feel.
Doctors often find it difficult to explain the new diagnosis to patients in the right way. It can be difficult for people with NEAD to understand how a condition that feels completely physical can be linked to emotions. Poor communication of the diagnosis of NEAD can leave patients feeling like their doctor thinks that they are ‘making it up’ or that the attacks are ‘all in their mind’. However, NEAD are a real condition with recognised treatments.
See here for how stress can cause physical symptoms.
For some patients, it is too difficult to accept the new diagnosis. They may continue to believe that they have epilepsy. These people may refuse to take up the right treatment, which means they are less likely to recover.
For some patients, simply being given a label for their symptoms and so understanding what their attacks are can mean that they stop having as many attacks or that their attacks stop completely (around 1 in 10).
Being given a label for symptoms can provide a sense of relief. Knowing that you have a recognised condition can help patients to realise that they are not the only one out there with this, or that they are not ‘going mad’.
Understanding what your attacks are can also provide a sense of relief that the attacks are not more sinister and that you do not have to take medication.
Many people say that receiving the diagnosis has left them feeling in limbo. Short appointment times with doctors can mean that the diagnosis is not explained fully and they go away unsure of what the condition is. Further, the lack of specialist services for NEAD and long waiting times for psychological treatment can mean that many are never given further support or any clear explanation of NEAD. It's no surprise that some people despair, feel hopeless and like they will never get better.
People with NEAD often feel that they passed from pillar to post. Doctors may have told them that they do not know what is wrong with them, and even counsellors or psychotherapists may have never come across the condition before and so discharge them without any further help. This makes some people with NEAD feel angry about the poor treatment they have received and hopeless about ever receiving the correct treatment.
Some people also feel angry that the incorrect diagnosis of epilepsy was made. They may feel angry at having lived with the stigma and restrictions of epilepsy for so long. This can also lead to some people feeling a loss of trust in a medical service and healthcare professionals.
Frequent visits to A&E and hospital admissions mean that some people with NEAD hear many different diagnoses. Without receiving a clear diagnosis from an expert, or further support from psychological services, some people have a loss of trust in the new diagnosis and continue to think that they have some form of epilepsy, continue to take antiepileptic drugs and never receiving the correct treatment.
The most important thing to do after receiving the diagnosis of NEAD is try to learn more about the condition and understand what is causing your attacks. For more information on learning about the causes of NEAD and the best treatments see our Causes and Treatment pages.
Another obstacle to face after receiving the diagnosis is trying to explain it to other people.
Several people with NEAD have decided to show clips of their seizures on YouTube. If you want to see some examples of what NEAs can look like you can look at these clips. Please remember that there are many different types of NEAs and that your attacks may look very different. You may be interested in this clip as an example of what a seizure can look like.
For more information on what to tell people about the diagnosis of NEAD click here.