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 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.
I guess sharing my story I need to start from when I was 10.
When I was 10, I was frequently sexually assaulted by my neighbour’s son who was 13. No one believed me, but they believed him and took his word against mine. I was too scared to say anything else because one of the people who didn’t believe me was my mother.
My young mind “learned” that the assault was my fault because I was grounded for making up lies and believed I should kill myself. But I was strong enough and a knock to my front door stopped me from suicide.
I bottled this up.
At the age of 18, 8 years after my assault, I was assaulted again, this time by a friend’s step dad. I believed it was my fault that night too. From then I wanted to get help but I was scared of judgment, I was scared of laughter, I was scared because it showed the world that I want help. It showed that I wasn’t scared but embarrassed. Embarrassed of getting help.
Eventually at the age of 21, I asked for help. One good thing I thought I did until my gp said ‘I don’t believe in talking to people you should try medication instead’.
For 2 years it stuck with me. And I bottled it all up. Until I heard about Headspace
at the age of 23. It was the best thing I ever did. I’m so glad that it was for free. I was finally able to talk to people about what I was going through mentally.
By the time of 25 I had to leave Headspace as it’s a mental health resource for people under the age of 25. It took me ages to find someone else. Eventually I found a great doctor. And again, thankfully it was a free service. It took me a long time to talk to him and open up about everything. A whole year to be exact. I found a new GP and he has even helped me come so far, breaking my wall down. I opened up to both of them.
Fast forward to the end of 2017.
Work found me collapsed. I went to hospital that night. The hospital didn’t know what was wrong until I had a seizure. The hospital staff responded with “Oh its pseudo seizure here talk to our mental health staff to arrange a psychologist.” When I explained to them that I have a regular psychologist they said “OK you’re good to go. I don’t know why the hospital referred you to us. You seem fine.
I was back hospital in seizing up. Seizing for hours. But I was fine according to the hospital. Its because I’m depressed, its because of my assaults, its because I’m suffering anxiety that they won’t do anything.
I have an answer, a diagnosis, of pseudo seizures. I’m still being judged. The people around me and their responses it makes it so difficult to open up to people. It makes it harder to receive help from mental health doctors because people put it in your head that “you’re fine”, “other people are worse off” or they say “you don’t look sick”, “why don’t you work?” and “Stop faking”. The doubt and the disbelief are so damaging to people like us. It’s those words that make it hard for us to talk to people.
I’ve found out recently that my brain is fine and I should stress less. I’m not even stressed, why tell me that I am? People are willing to blame it on my past. And if I have pseudo seizures why don’t I end up in a psych ward? Or is it because I’m normal compared to the people in those wards? All I want to do is get help from someone. Someone who doesn’t charge out of this world, to see someone who can help me, so I can become normal again and live my life without fearing the worst.
Its just amazing how people treat me different when I say I have it. Including now my own family. Its heartbreaking. I just wish I was normal. I wish I didn’t have these seizures.
If you think you may be suffering from PNES or would like more information on anything you have read in this post please contact us.
9 thoughts on “Raising awareness for invisible illnesses; NEAD Non epileptic attack disorder”
I think that people do not understand this disease, since this is not said about anywhere. Those who suffer from attacks try not to show it because they are afraid that will not understand them.
I too suffer from these seizures and they happen every second day sometimes for up to 3-4 hours. We need to raise more awareness because people just don’t get it! I suffer from FND and these seizures are a huge symptom!
I’m happy to let the world know about these horrible things as we need the word out 👍🏼
I also suffer from pnes, had a huge seizure in August. Broke my foot, 3 ribs, 4 toes on one foot and dislocated 4 toes on the other foot. Was seizing for 16hrs straight, lost 15kg in sweat overnight..
Was on epilum for years all the did was make me hallucinate and spew a lot, seizures never went. Have been diagnosed with pnes by neurologist after eeg and video of seizure from partner and told that the only way I can come close to being seizure free is through therapy. Even my 1st psychologist said that “that if I worked hard enough and long enough in therapy, there would be a chance I could be seizure free” then they took my therapy (only hope gone)!
So I hear you
It takes a huge amount of strength and bravery. Thank you so much for sharing your story, JP.
Thank you queen, am trying to do it in smaller chunks… I promise there is a point to all my ramblings… I have never written about this part of my life before and in 1 way it is really helpful in another it is dragging up all the emotions locked down tight, that I never realised were there…
That sounds like a really great form of therapy. Your writing can help you sort out the difficult thoughts that haven’t been processed by your mind. I’m here cheering you on JP. Keep on going, you’re doing great.
Thank you queen is so appreciated just didn’t want to bore everyone…there is a point but needs context first. If I start to ramble or bore you plz let me know.
It’s a deal. Write for yourself, don’t worry about whether the audience is bored. The right audience will appreciate your writing.
Thx Queen, didn’t realise how it would affect seizures remembering old emotions lol… Working on next few pages, if I can stay upright long enough 😦