7 Things I Want People to Know About a PNES Diagnosis

It’s been a little over six months since my diagnosis of psychogenic nonepileptic seizures (PNES), and nearly one year since the seizure that would lead me on this journey to identify, treat, and live alongside a seizure disorder.

While PNES is not terribly well-known, it is also not terribly rare; with a prevalence rate of “2-33 per 100,000,” as reported by the Epilepsy Foundation. However, because so few people are familiar with seizures that occur as the result of chronic illness (and tend to be more familiar with seizure as a symptom of another illness, like a particularly violent viral infection), I am usually able to brush over the “psychogenic” descriptor — saying little more than “seizure disorder” before people reflexively move the conversation to Seizure First Aid. Occasionally, I will clarify that I do not have epilepsy; that my seizures are a response to psychological trauma stemming from a decades-long struggle with migraines. But PNES is typically characterized by “seizures due to psychological distress.” Hence, many others with PNES have to deal with the stigma attached to the connection between the seizure disorder and psychological illness.

Other relevant stories:
• Epilepsy Triggers
• Can Flashing Lights Cause Seizures Without Epilepsy
• Can Students with Epilepsy Participate in Sports

Having a seizure disorder is incredibly difficult in all the ways you can imagine. But the shame that accompanies seizures that are not physiological (in the same way that epilepsy can be identified on a EEG) is an enormous weight that can create the temptation for those with it to dissociate out of fear, embarrassment, and self-preservation.

The trauma that causes my brain to derail with such ferocity is directly linked to a chronic, physical illness. For others, sexual abuse, domestic violence, the death of a spouse/parent/etc., or another extremely traumatic event might cause the dissociation indicative of PNES. This article is primarily written with those people in mind, because as much as I struggle to live with seizures, I don’t have to face those traumas alongside the disorder. Nor have I encountered the judgment, ridicule, or denial that can accompany discussions about PNES with physicians, family, or friends.

On behalf of the many people who struggle silently with PNES, here is what I want you, our friends, family, supporters, bosses, coworkers, colleagues, etc., to know:

1. We want to talk about it. Conversations about PNES are difficult to have, especially when you are afraid of being judged as a “faker.” But talking about it — warning those in our lives by providing education about Seizure First Aid, and building support networks — actually helps relieve the stress that can exacerbate the illness and work to create more seizures. Knowing that we can feel safe around friends is immensely anxiety-reducing.

If you’re someone with PNES, I encourage you to work up the bravery to speak candidly about your illness to those you trust, and learn how to broach the subject with the people in your life you spend a great deal of time with. (This is a great resource for discussing your seizures with your boss.)

2. We aren’t faking it. The impulse to identify any illness that cannot be captured on a test as “faked” and vilify someone as an “attention-seeker” is so backwards and so detrimental to allowing researchers the funding and credibility needed to study the illness and discover treatment. Just don’t be that person — be kind and consider the accusation you’re making before you make it even harder to have PNES.

3. Our seizures are real. According to Dr. Carl W. Bazil, M.D., Ph.D., professor of clinical neurology at Columbia University College of Physicians and Surgeons in New York City, “Many patients also find the diagnosis difficult to accept, as they erroneously feel that they are being told the episodes are not ‘real.’ They are, in fact, very real, and one of our jobs as neurologists is to affirm that. It is also difficult in that the cause is not really known.”

Just because we don’t have an epilepsy diagnosis, and just because neurologists don’t have the tools needed to explain what is going on, doesn’t mean that the seizure you may be witnessing is not extremely frightening and physically dangerous. Elizabeth Stump, in her article for “Neurology Now,” reports, “Patients with PNES may fall and shake, as they do with the convulsions of tonic-clonic seizures; or they may stare and experience a temporary loss of attention that mimics absence seizures or complex partial seizures. Other symptoms include memory lapses, confusion, fainting spells, and body tremors.” This means that things like Seizure First Aid are critical to ensuring we do not get hurt, so we really need people in our life to know what to do.

4. Please don’t ignore someone’s seizure. And become familiar with Seizure First Aid. Following Seizure First Aid, including these steps laid out by the Epilepsy Foundation, can help keep me safe.

5. Recovering from these seizures can be difficult. After a seizure occurs, our brains are overwhelmed, our bodies are tired, and in my case, my migraine is unbearably painful. I always need to rest in some capacity after a seizure, and sometimes, I fall into a deep sleep. Even more often, the day after an episode leaves me feeling very “out of it,” making real life incredibly difficult. Please respect what our bodies and minds needs in this state, allowing us the rest needed to heal.

6. The diagnosis changes us. Having a seizure disorder has radically shifted the way in which I interact with the world. The anxiety that follows me around as I try not to constantly worry about having a seizure in public has greatly reduced my desire to be more uncomfortable. Sometimes, I am painfully aware of how much more cautious and frightened I am, and I’m disappointed in what I feel I’ve lost because of PNES. Other times, I am better about accepting the kind of courage I now have to exhibit — the kind where I want to advocate and support those that struggle in silence with PNES.

I am certain I am not alone in lamenting how different life becomes after a PNES diagnosis, nor do I mourn the loss of an “old me” alone. For those who still contend the disorder is fictitious, please consider this point — people with PNES might have to come to terms with losing the ability to work, losing their driving privileges, losing their financial stability (racking up enormous medical bills), and losing friends and family. Even if we are able to maintain the responsibilities of adult life, it can change the safety we once felt about the control we had over our lives and replace it with an awareness that it could all fall apart in one second. That is not a sensation worth the attention, sympathy, affection, or assistance that we might receive from the people in our lives who understand what we’re going through.

7. You can help. You can help us fix the system. There is a profound lack of resources available to those with PNES because it is so stigmatized. No one is chomping at the bits to fund an illness everyone is afraid to talk about. If we stay silent, we don’t enlighten the general public about what PNES really is, allowing researchers to overlook the condition.There was a time when depression, eating disorders, and bipolar disorder were heavily stigmatized, and I believe we have come a long way in making the medical world accept the validity of these conditions, and bring critical discussions into the spotlight. There’s no reason we can’t do the same for PNES.

Only by providing support and educating others will things ever change for the thousands of people around the world with PNES.

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