Shame and Psychogenic non-epileptic seizures (PNES): research topic?

A few weeks ago, I was contacted by one of the leaders in the field of research of Psychogenic non-epileptic seizures (PNES); he proposed a project to several professionals in the field of PNES focusing on a topic that is often overlooked not only in PNES but in many other conditions and a variety of clinical settings. He stated that he had the sense that this emotional state may play an important role in the outset and maintenance of PNES and merited more attention.

As soon as I heard his proposal (and I started to see signs of it in my patients over the subsequent therapy sessions now that my attention was primed for it), I was surprised to note that this topic has never really been directly addressed in the growing body of PNES research/literature.

The topic he proposed a group of us examine more carefully is: SHAME. And as I reflected on my personal history of shameful experiences (we all have them!), I realized just how powerful a feeling this is (it’s visceral and even decades later, a shameful recollection causes a powerful psychological and physical reaction as soon as it is recalled).

So, you may ask yourself, what does shame have to do with PNES?  I think it exists in most patients on several levels. In fact, over the years, I have heard patients diagnosed with PNES express shame for a variety of reasons.  Furthermore, looking back, I realize that on many occasions I have witnessed a patient begin to recall and verbalize a particularly shameful and painful experience only to have a seizure suddenly occur, as if the seizure were a protective mechanism.

So, let’s start with a definition: “Shame,” according to is: “the painful feeling arising from the consciousness of something dishonorable, improper, ridiculous, etc. done by oneself or another.  Disgrace, ignominy.”

1) Nearly all of my patients report feeling shame at some point simply because they have PNES! It is not uncommon that someone (health worker or community member) communicated verbally or non-verbally that the seizures are not real, or that PNES is not as serious an illness as some physical illnesses (e.g. epilepsy) and that these patients are misusing medical services that should be dedicated to patients who really need them.  Sometimes, the communication is that the patient is weak because they cannot handle stress (which the rest of us have and somehow manage to survive without developing seizures). Or, that their seizures are feigned, fake, or made up, and then, logically, that these seizures as voluntary.  As a result, the patient is considered responsible for this breach of a social standard and is shamed.

2) But let’s not forget the shame associated with having a mental/psychological/psychiatric disorder in the first place. Because when the patient is informed that they do not have epilepsy but rather, have a “stress disorder,” they enter into the world of mental illness.  And where there are psychological diagnoses, there is stigma. And of course, there is also the shame of having a seizure at all, especially in public. Losing control of one’s body and brain is disturbing and can feel embarrassing. Seizure disorders are typically stigmatized by the general public.

Definition of stigma according to A mark of infamy, disgrace, a stain or reproach, as on one’s reputation.

3) And last but not least, when patients have a history of severe psychological trauma (in particular, sexual abuse/assault, physical abuse, other forms of extreme abuse) which is unfortunately not uncommon in PNES, there is a triadic source of shame: (a) the belief that the person somehow caused the abuse, (b) the global attribution of being damaged, broken, and (c) the humiliation associated with the abuse.

After jotting down these thoughts, I think that shame may indeed be an important emotional state to study further in patients who have PNES.

But first, I would like to hear opinions, comments, ideas about this topic: Do you think shame is especially present in PNES, is it an emotional state that clinicians might do well to consider? Maybe think back and answer this question for yourself, have you ever had a seizure that triggered as you were revisiting a shameful memory?  Or is this just one of many painful emotions and not necessarily related to PNES at all?

6 thoughts on “Shame and Psychogenic non-epileptic seizures (PNES): research topic?”

  1. Shame comes with a big emotional response for me. Many times like you said either in therapy or in life circumstances recalling the traumatic memories and the shame with them usually does lead to a seizure. And then after each seizure you feel all three types of the shame 1, that you have seizures, 2, that they could be from something traumatic, 3 the shame from the experience. It is a triple whammy and primes our system to be ultra protective and shut us down into a seizure.

  2. I have had PNES for 13 years cause by PTSD from a child hood Trauma.
    This has been an down hill battle for me until I found the right mental health profession that has helped me in many areas of my PTSD.
    I have been to many many doctors, which most of them didn’t understand my condition PNES. Ppl: they are real seizures! My last Dr. at UAB Alabama told me to stop going to the ER because they didn’t not know how to treat you!!!! Find a good psychologist!! I still have grand mail seizure but not as often as I did when I was diagnosed. The first year after I started having seizures I had over 200. DONT be ashamed it’s nothing you have done to your self.

  3. Hello,
    My 15 year old daughter was just diagnosed with PNES last week. This is all new to us. As her mother I want to learn as much as I can to help her. I will say I felt shamed or taken aback, after she was diagnosed in the hospital, how the medical staff just didn’t take it serious! To me slow to get to her, slow to comfort completely and just look at her and not show compassion even if it wasn’t a true epileptic seizure.
    It happened again tonight with the paramedics.

  4. Not shaming someone would go a thousand miles towards shortening the duration/frequency of seizures or helping someone feel safe enough to get psychological treatment. I’m still on Meds bc I have both seizures and PNES, but the PNES slowed to a stop beginning the day I stopped seeing the diagnosing Dr. He treated me like I was worthless every time I saw him, like I was taking up his time. The longer I saw him, the worse and more frequent the seizures became. I thought he was part of the problem somehow but couldn’t put it together until I read this article. I don’t know if there over and I have another Dr. I am learning to trust. My faith in the medical profession is far from restored. Shame is indeed a big factor. No one wants to be thought of as worthless !

  5. Florence Covell

    I have PNES and for me shame is the worse feeling. When I feel shame I feel it goes to my core and I feel as if I evaporate, explode apart, become invisible. Shame gives me a feeling of temporary emotional suicide to escape the shameful situation– A BLACKOUT from the world.

  6. Devora Goldman

    Absolutely- I am going to say, all of the above. I am glad that this topic is receiving attention, because it is so necessary for the medical community to understand. It is a first step towards reducing the medical violence towards PNES patients.

    Regarding the shame related to the abuse- most definitely as well. I experience the feelings of shame as very intense and specific types of seizures. It took me a long time to learn this, and to attach the word “shame” to this seizure type. It’s very, very intense, and often accompanied by nausea, vomiting, etc.

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