Living with Epilepsy-Living with Epilepsy

Video Transcription

Hello. My name is Kristen Seaborg. I'm a former pediatrician and now a child neurology resident and also a patient who's living with intractable epilepsy.  Today, I'm going to talk to you about a personal experience, what it's like to live with epilepsy.  We've all been part of conversations where we initially diagnose a patient with epilepsy and as is necessary, usually the conversation begins with a list of things that the patient  really can't do and the list of things they may be at risk for, although that might come down the line.  So I remember very well the conversation I had and other people in the epilepsy community  I've talked to remember that first conversation very well and always remember the things they were told they couldn't do.  For instance, you can't drive until you've been seizure free for three to 12 months. You can't swim alone, can't take a bath alone, you shouldn't climb ladders alone, you shouldn't  skydive, operate heavy machinery or do anything where a transient loss or alteration in consciousness could be harmful to you.  Also patients take this conversation usually go home and read the literature you've given  them or read on the internet and soon enough find out that they're at risk for sudden death.  They may be at risk for complications with childbearing or increased risk of birth defects. They may be at risk for cognitive decline in the future, depression or anxiety or other  psychiatric comorbidities. As you can imagine, this initial conversation is often very overwhelming to patients.  What I would propose is that although that conversation is extraordinarily important to happen and be in the best safety of the patients, what if we began that first conversation  a little bit differently? Instead of starting right off with a list of things they can't do and things that they  might have happen to them in the future, what if we started right away explaining that all though you may have epilepsy, epilepsy will not affect who you are, it does not define  you. Epilepsy does not affect your ability to live a fulfilling life or to contribute to society.  And while there will be restrictions for a patient with epilepsy that they can't be commercial  drivers or airline pilots or probably cannot be forklift operators, it's important to open the list of possibilities of what a patient with epilepsy can do instead of making sure  that we close those doors. As we'll discuss further on in this lecture, stigma is so important and so much of an effect  for patients with epilepsy along with unemployment and health-related quality of life that if we begin this initial conversation with a slightly different tone, it might really make  a difference for patients. So what about stigma? Stigma in the Cambridge English Dictionary is defined as a strong feeling of disapproval  that most people in society have about something, especially when it's unfair. So a European study done not long ago showed that approximately 50% of patients with epilepsy  experience stigma or perceive that they are experiencing stigma. It's most often rooted in misunderstanding of an illness or a condition and rooted in fear.  For example, when the AIDS epidemic was occurring 40, 50 years ago, stigma was a big part of what was happening.  In addition, there's still stigmatization with mental illness and historically there was stigmatization of patients with breast cancer.  What has been shown is actually illness-related stigma for patients with epilepsy can really have powerful effects on not only just their seizures but their economic status, their  social interactions and their overall health. Sometimes the stigma is even greater than the effects of illness itself.  These are ancient tablets from the prehistoric times in Babylonian era. They're circa 600 BC. This is tablet number 26 you can see here, 26 of 40.  This contains a chapter on epilepsy. When they were able to decode the writing on these tablets, we were able to see that  the ancient Babylonians wrote about every single different seizure type that we know exists today.  But they went further on and they described each seizure type and then associated with each seizure type being actually secondary to a supernatural invasion of the body by demons.  So stigmatization associated with epilepsy began very early and has continued somewhat throughout to this day.  Despite progress, unfortunately, the stigma associated with epilepsy still remains to some degree, even within the medical community.  Looking a little bit closer to our time, there's documentation of the Salem Witch Trials, how the witches were found often as women who were having seizures and they were  hung to death because of their seizures. Earlier in the 1800s and 1900s, there were colonies and forced colonization of patients  with epilepsy to live separately from the rest of society so they couldn't spread their seizures to others.  Even as recently as now, in the medical community, there are words that we throw around sometimes  in the wards or things that we pre-assume about our patients that aren't necessarily fair and perhaps are rooted in stigma.  For instance, have you heard the term temporal lobe epilepsy personality? That was related to a 1970s study where the researcher thought that they could prove that  patients with temporal lobe epilepsy were more prone to emotional ability, to mania, to depression and guilt and anger and hostility.  While this study has been recounted, still the stigma exists to some degree today and the assumption exists to some degree.  In addition, at a pediatrics conference I was at when I was a pediatrician just years ago, a pediatric epileptologist stood up in front of a group of 400 to 500 pediatricians  and while talking about teenagers living with epilepsy, quickly followed up and mentioned  that all teenagers living with epilepsy have probably faked a seizure at one point. Now while that may be true for some patients in some scenarios, the overwhelming belief  or idea spread to thousands of different doctors that patients with epilepsy are faking their seizures isn't necessarily true or really fair to the patients with epilepsy.  Finally, the use of the word seizure disorder, it doesn't really isn't harmful or worrisome but sometimes does kind of further that stigma.  When a patient was diagnosed with cancer or diabetes, we don't say that they have a cancer disorder or diabetes disorder. We just name the disease for what it is.  This was actually addressed by the International League Against Epilepsy in 2014 and to paraphrase,  they said here, the term disorder implies a functional disturbance, not necessarily lasting whereas the term disease may convey a more lasting derangement of normal function.  The term disorder is poorly understood by the public and minimizes the serious nature of epilepsy.  So for patients with epilepsy, not only a stigma, feared, complication of seizures and epilepsy but certainly loss of independence sometimes is one of the highest feared secondary  effects.  Driving in particular is extraordinarily important for adults living with epilepsy and for many  patients living in rural or suburban areas, the ability to drive is often essential for independence and employment.  Depending on the state of residence, patients must be seizure-free for 3 or up to 12 months in order to be able to drive legally.  This restriction and the fear of losing their independence often leads patients to not be honest with the epilepsy providers regarding their seizures or not be honest with the  true effectiveness of this medication. In addition to the seizures themselves, the side effects of many of the sedating medications  especially can impair driving and then the loss of driving privileges for many patients with epilepsy is honestly one of the most feared consequences of seizures and one of  the things that people in the epilepsy community often discuss the most. In addition to loss of the ability to drive, there are many other factors that can inhibit  and change the ability for a patient with epilepsy to have independence and kind of their own ability to do what they'd like.  The diagnosis of epilepsy in fact has been shown to be associated with increased dependencies, increased feeling of helplessness and loss of control of their own lives.  For some patients, seizure worry or the fear of having a seizure can be almost as disabling as seizures themselves.  For patients who have identified their triggers, seizure worry can be intensified during periods of stress, during periods of sleep deprivation or when they are ill.  For patients who have seizures associated with sensory auras, sometimes symptoms that mimic the auras that they might experience such as abdominal discomfort or transient  anxiety or transient dizziness can constantly trigger a feeling of seizure worry and a feeling that they are always at risk of having seizures.  This can really affect the quality of life for a patient living with epilepsy. Also, activity restrictions can definitely contribute to the loss of independence for  a patient with epilepsy. As we discussed at the beginning, epilepsy and the diagnosis of epilepsy often comes  along with a lot of restrictions and recommendations regarding the things to do that will most allow for safety of a patient.  Recommendations to avoid doing certain things alone like bathing or climbing on ladders or swimming alone really can limit the autonomy of a patient, limit their independence.  For patients in blue-collar jobs like jobs where they might need to operate heavy machinery or come in contact with different things that could cause harm if there was a transient  change in consciousness, these patients often need to rethink their job and rethink their career and their eventual goals for themselves.  However, at the same time, while it's really important for us to address safety and recommendations  and ways that our patients can be the most safe and the most independent, it's also important  to recognize that too much restriction and isolation can foster low self-esteem and really emphasize the disability for a patient with epilepsy.  This unfortunately becomes kind of a circular cycle because patients that feel isolated with low self-esteem are more prone to depression and depression can sometimes escalate the  symptoms of epilepsy or epilepsy can contribute to depression and it all becomes very interrelated.  Underemployment is also a very important thing to make sure that we are addressing in routine office visits for patients with epilepsy.  Certain studies have shown, especially one done in the Netherlands not too long ago, that employment in patients with epilepsy is influenced by the use of multiple anti-epileptic  medications, by the frequency of a patient's seizures, and by the severity of a patient's seizures.  Similarly, the inability to drive or a patient's lack of independence to get to and where they  need to be at certain times really can interfere with employment and at times stigmatization,  employers' false belief about how epilepsy may affect a certain patient can interfere with their employment as well.  Holland did a study of 1,000 patients with localization-related epilepsy done in the Netherlands and they were able to show that there was an inverse relationship between  uncontrolled seizures and employment status, so the more seizures a patient had, the less likely they were to be employed.  Employment rates of patients with seizures that were in good control or patients that have remission of their seizures is actually or could be similar to the general population.  Patients with epilepsy in white-collar positions are more likely to maintain a near-normal employment than those who held jobs requiring physical labor or jobs that would require  operation of heavy machinery or things that might put them at risk. Employment compliance is something that also really can affect a patient's with epilepsy  ability to succeed and an ability to maintain adequate control of their seizures but can be very difficult for patients that are struggling with different factors in their lives.  So Stanaway and his group were able to show that as many as 31% of seizures in patients with epilepsy were precipitated by non-adherence.  So a third of the seizures that patients are experiencing are actually related to their inability to maintain compliance with the prescribed regimen and up to 40% of seizures  were associated with missed medications or with sub-therapeutic drug levels. So while compliance is difficult to police, it's actually very, very important to discuss  because the less apt a patient is to comply with their prescribed medication regimen, the more apt they are to have breakthrough seizures.  There are many factors that can influence medication compliance. Things as simple as the ability of a patient to take the medications two times a day versus  three times a day versus four times a day really can affect their ability to comply with that regimen.  Also it's been shown that the age of a patient can have a correlation with the compliance. Elderly patients tend to be less compliant because of lack of understanding of complicated  medication regimens. Patients that are on just monotherapy are more likely to comply with the regimen than patients on polytherapy.  Patients that have been living with epilepsy over many years are less likely to comply than patients who have been living with epilepsy for less period of time.  In patients' relationship with their physician is a very actionable variable that we can control as physicians.  If a physician is empathetic with a patient's concerns, if they are willing to listen to  the side effects that a patient is experiencing or how easy it is for them to take their medication,  this actually can be correlated with a much higher incidence of compliance and ability to maintain medication regimen as prescribed.  And stigmatization has been shown especially in an Indian study to have an association with decreased medication compliance.  If patients feel stigmatized by their epilepsy, they are less likely to take their pills as prescribed because they perceive that taking the medication highlights their disability  and highlights their ongoing risk for seizures. Some factors that we often think may influence medication compliance have actually been proven  to have no association with compliance of medication. These things are like socioeconomic status.  People of all socioeconomic statuses have about relatively equal compliance rates and sex has no correlation with medication compliance.  From my perspective as a patient with epilepsy, the things that help me comply with the medication regimen as prescribed is the ease of the medication regimen.  As a trainee and as previously a practicing physician, there was really no way taking TID medications was going to be possible at routine times every single day.  So the simpler we can make anybody's regimen, the better. For some patients, understanding the side effects that they may experience and how long they may last is very helpful.  If for the first several doses of a medicine, you feel very tired, nauseous, fatigued but you know it's transient and will go away in 5 to 7 to 12 days, then many people will push  through that period hoping for a period of better seizure control. The willingness of the physician to listen is very important to me as well.  A lot of the medication side effects associated with the anti-epileptic medications are very vague and difficult to quantify.  A sensation of feeling fatigued or feeling dizzy or nauseous doesn't really have any physical signs but really can be profoundly effective to the patient that is experiencing them.  So a physician who is willing to listen openly and consider making the change based on kind of vague symptoms is somebody who is more willing to get a patient to comply with them  because they feel like they are being heard. Finally, discussion of what's next if this doesn't work.  It's always very helpful for a patient to see kind of the next steps down the road. If a patient feels like I need to do X and if X doesn't work, then I've just failed,  that's a really kind of frustrating place to be. But if they understand that there are options for changing and options for alteration medications  until we find that thing that may work better, then it is always very encouraging. Psychiatric comorbidities is something that we are becoming more and more aware of as  we treat more and more patients with epilepsy. I think we all know that patients with epilepsy have a higher risk of developing depression and anxiety than the general population.  Depression is present 5% of the general population but maybe as high as 20% in patients with certain types of epilepsy.  Similarly, mood disorders, when they are there, can have a really significant impact on the health-related quality of life.  And at times, mood disorders have been shown to have increased effect on the health-related  quality of life for patients with epilepsy even more than the presence of ongoing seizures themselves.  Fortunately, many of the medications we use to treat epilepsy are associated with psychiatric side effects and side effects of depression and suicidal ideation.  And even without an undiagnosed mood disorder, up to 25% of patients with epilepsy state that their medications make them feel depressed.  And also, things that we can't necessarily quantify again but other factors may influence the presence of depressed mood or anxiety, factors like seizure worry, factors like ongoing  information or kind of the knowledge of maybe you might develop depression or down the road you may be more at risk for cognitive delays or disabilities.  And the concern pursued out for patients that are prone to anxiety is something that's very important to address and can be treated appropriately with psychotherapy if needed.  Finally, family and support systems are really important for all patients with epilepsy and  kind of addressing how these impact their care and their success with prescribed medications and ongoing seizure control is very important.  It seems like the relationship of patients, family, and seizure control is very circular and all of these factors affect one another.  Patients with epilepsy that have a supportive family and supportive community around them have been shown to have less seizures and kind of better health-related quality of life.  Similar patients with adequate support systems tend to have less tendency for mood disorders or anxiety.  But patients that are more prone to depression or have poor social support at home actually  tend to have more breakthrough seizures and may have less medication compliance and subsequently worsening of their epilepsy. Thank you very much for your attention today.  Before we go, and these are the references I used in this talk, one thing I think is important to take away from this portion of the curriculum is that we learn very well,  I think, how to address seizures and medications to address seizures and possible surgical or alternative treatments for epilepsy, but there are so many other factors that factor  into a patient's success if they are living with seizures or even a history of seizures,  including family or social support, medication compliance, psychiatric comorbidities, underemployment  or unemployment, and stigmatization. The time that we see a patient is for only a half hour to an hour every three to 12 months,  but the time that this patient lives with epilepsy outside the office is exponentially more. So if we make an effort to address all of the other kind of ongoing psychosocial and  psychiatric comorbidities and kind of health comorbidities, especially with regards to mood and medication compliance and employment status, I think we will have a decent success  in being able to treat patients with epilepsy. Thank you.

Video Summary

Kristen Seaborg, a former pediatrician and child neurology resident with intractable epilepsy, discusses the challenges and stigmatization associated with epilepsy. She emphasizes the importance of changing the initial conversation from focusing on limitations to highlighting possibilities and personal identity. Seaborg illustrates how stigma, rooted in misunderstanding, profoundly impacts patients' social interactions, employment, and overall health. Historical perceptions link epilepsy to demonic possession, and current prejudices persist, affecting patient care and self-esteem.<br /><br />Driving restrictions are a major concern, often causing patients to hide seizures to maintain independence, which limits employment opportunities. Seaborg stresses that psychosocial factors, such as family support and psychiatric comorbidities, play significant roles in the quality of life for epilepsy patients. She advocates for empathetic patient-physician relationships and considers simplifying medication regimens to improve compliance. Ultimately, Seaborg calls for a holistic approach that addresses psychosocial aspects alongside medical treatment to enhance care for those with epilepsy.

Asset Subtitle

Presenter:

Kristin Seaborg, MD, is a fellow in Child Neurology at the University of Wisconsin, a board-certified pediatrician, and a patient with epilepsy. Dr. Seaborg was diagnosed with temporal lobe epilepsy at the age of 18 and had a right temporal lobectomy in 2003 in the midst of her pediatric residency. Her memoir about living with epilepsy, entitled "The Sacred Disease: My Life with Epilepsy," was published by the Gravity Imprint of Booktrope publishing in 2015. After over ten years of practicing primary care pediatrics, Dr. Seaborg decided to return to training in Child Neurology at the University of Wisconsin. She hopes that her perspective as both a patient and physician living with epilepsy will help to educate other providers about some of the unique challenges faced by patients with epilepsy.

Keywords

epilepsy

stigma

psychosocial

patient care

Seaborg

holistic approach