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The Sacred Disease: My Life with Epilepsy
Young Kristin Seaborg had the world at her a loving family, happiness and security, early admission to medical school--until the frightening diagnosis of epilepsy threatened to destroy both her career path and her health. Living in constant fear that her seizures would intensify and prevent her from practicing medicine, Kristin kept her condition a closely guarded secret, leading a tenuous double life as patient and practitioner. A memoir of discovery, acceptance, and hope, The Sacred Disease chronicles Kristin’s tenacious fight for a seizure-free life. Remarkably, although Kristin's knowledge and expertise continue to develop as a pediatrician and mother, her experiences as a vulnerable patient provide the most valuable lessons of all.
258 pages, Paperback
Published May 29, 2016
27 people are currently reading
247 people want to read
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Displaying 1 - 26 of 26 reviews
April 18, 2022
I was looking for this book, for almost 2 years.
Words cannot articulate my feelings when i found it nor when I finished it.
Tho i wished it never ends.
I have tremendous love for people who have epilepsy. Personally. I get to learn from them different definitions of resilience, they always come back stronger and stronger by each passing attack. When their world becomes shaky and lose control of their own bodies, they lay their faith in God.
I want my faith to be this strong.
Words cannot articulate my feelings when i found it nor when I finished it.
Tho i wished it never ends.
I have tremendous love for people who have epilepsy. Personally. I get to learn from them different definitions of resilience, they always come back stronger and stronger by each passing attack. When their world becomes shaky and lose control of their own bodies, they lay their faith in God.
I want my faith to be this strong.
April 15, 2016
I received a free copy of this book from Netgalley in return for a honest review.
The book was very well written explaining how the author lives with epilepsy from day to day.
This book was so uplifting showing how even in this day and age she had to fight the ignorance of her professional colleagues and the side of effects of her meds.
Brilliant.
The book was very well written explaining how the author lives with epilepsy from day to day.
This book was so uplifting showing how even in this day and age she had to fight the ignorance of her professional colleagues and the side of effects of her meds.
Brilliant.
October 17, 2018
Dr. Seaborg thank you for sharing your story about your life with epilepsy. I, too, have epilepsy. I had my first seizure at about 7 (it was a petit mal one). My first grand mal seizure (collapsing to the floor, losing consciousness and biting my tongue) came at the age of 14. This kind of seizure is brutal, as you well know. It would take me hours to recover. Only my immediate family and doctor knew about my epilepsy. I was too ashamed to confide in anyone else because of the stigma attached to it. I could relate to a lot of things that Dr. Seaborg said. For example, she said she knew all of the hiding places in the hospital in the event an aura came on, which could portend an oncoming seizure. When I would attend press conferences as a journalist, I would take notice of all the exit signs in case I had to get away fast.
When I was growing up, my family usually knew that I would have a seizure before I would. I can still hear one of my sisters telling my mom, "Susan's staring." And I almost always had a seizure that day. I have been seizure-free for almost 30 years. But I still take epilepsy medicine, make sure I get an adequate night's rest and abstain from alcohol. This book is a must read for anyone with epilepsy and for parents of children with epilepsy.
When I was growing up, my family usually knew that I would have a seizure before I would. I can still hear one of my sisters telling my mom, "Susan's staring." And I almost always had a seizure that day. I have been seizure-free for almost 30 years. But I still take epilepsy medicine, make sure I get an adequate night's rest and abstain from alcohol. This book is a must read for anyone with epilepsy and for parents of children with epilepsy.
December 29, 2015
As I read Kristin Seaborg's memoir, The Sacred Disease: My Life with Epilepsy, my emotions ran the gamut from fear to frustration to happiness as Kristin lived with this determined disease. Her story rings with the same range of emotions, and yet she never gave up hope on the life she dreamed for herself.
Kristin's epilepsy began at a very young age (16 months) during a bout of influenza accompanied by high fever. Leaving the hospital a physician commented the seizure that brought her to the emergency room might "not be the end of Kristin's seizures." Unfortunately, his prediction was correct.
Equally unfortunate were the life experiences tied to Kristin's seizures by her playmates and classmates and often some adults. We are an insensitive people when we do not understand the other's battle. Yet, Kristin never lost sight of her faith in God, although there were times of doubting:
This quote is just one example of the frustrations Kristin faced even though her life as a physician, wife, and mother was thankfully viable. But why should one person never be free of pain, fear, and medication?
There are millions every day who face living with a chronic illness, and epilepsy is one of them. This book needs to be read by every man, woman, youth on the planet to learn about acceptance of these people who cannot always help what happens in a public place.
Additionally, Kristin's story, in which she is not only patient but physician, needs to be read by every physician, nurse, caregiver, and anyone else working in the healthcare field to learn the necessity of thoroughness, patience, and compassion.
Kristin Seaborg has written not only her life story of epilepsy but also a concise tutorial for the rest of us on epilepsy. Her examples as patient on the inside of the hospital bed rails and as physician on the outside of the railings show the reader the intimacies of epilepsy we might not otherwise experience.
Dr. Seaborg also stands as an example not only to people attempting to support somewhat normal lives while living with epilepsy, she also reveals they can become whatever they dream of, in most instances, and they can marry and have children of their own. She is an author we want to watch.
FTC Disclaimer: I received a copy of The Sacred Disease from the publisher via Sage's Blog Tours in exchange for a fair and honest review. Opinions expressed are mine.
Kristin's epilepsy began at a very young age (16 months) during a bout of influenza accompanied by high fever. Leaving the hospital a physician commented the seizure that brought her to the emergency room might "not be the end of Kristin's seizures." Unfortunately, his prediction was correct.
Equally unfortunate were the life experiences tied to Kristin's seizures by her playmates and classmates and often some adults. We are an insensitive people when we do not understand the other's battle. Yet, Kristin never lost sight of her faith in God, although there were times of doubting:
WHAM! The flash of pain was a reminder of the defect in my vision that remained after epilepsy surgery.
...
'GOD!' I exclaimed. Tears sprang to my eyes.
Where was He anyway? ... 'I'm tired of pretending that everything's OK,' I cried. 'I'm tired of running all the time, meeting other people's needs and feigning an image of order and control. I'm surrounded by chaos and I'm definitely not in control.'
Kristin Seaborg from The Sacred Disease
(Kindle edition, Loc. 2729)
This quote is just one example of the frustrations Kristin faced even though her life as a physician, wife, and mother was thankfully viable. But why should one person never be free of pain, fear, and medication?
There are millions every day who face living with a chronic illness, and epilepsy is one of them. This book needs to be read by every man, woman, youth on the planet to learn about acceptance of these people who cannot always help what happens in a public place.
Additionally, Kristin's story, in which she is not only patient but physician, needs to be read by every physician, nurse, caregiver, and anyone else working in the healthcare field to learn the necessity of thoroughness, patience, and compassion.
Kristin Seaborg has written not only her life story of epilepsy but also a concise tutorial for the rest of us on epilepsy. Her examples as patient on the inside of the hospital bed rails and as physician on the outside of the railings show the reader the intimacies of epilepsy we might not otherwise experience.
Dr. Seaborg also stands as an example not only to people attempting to support somewhat normal lives while living with epilepsy, she also reveals they can become whatever they dream of, in most instances, and they can marry and have children of their own. She is an author we want to watch.
FTC Disclaimer: I received a copy of The Sacred Disease from the publisher via Sage's Blog Tours in exchange for a fair and honest review. Opinions expressed are mine.
December 21, 2015
I’m often drawn to books about topics I can relate too; as an Epileptic, I could very much relate to this. The book was not only very well written it described aura (“weirds”) very well, and takes you through the day to day of living with seizures. Saying that I enjoy hearing of others on the same meds as I am on, seems sick and wrong, but it’s not often you hear of others on Zonisamide as it’s a fairly new drug, so it was reassuring to see she was also taking it. It’s great to know that others are struggling with stepping up and stepping down from medicine.
I love how even with something like epilepsy, Kristin was able to hold not only JUST a job, but a job as a doctor, be mother, and a wife. This is very reassuring for many of us out here. THANK YOU!
I love how even with something like epilepsy, Kristin was able to hold not only JUST a job, but a job as a doctor, be mother, and a wife. This is very reassuring for many of us out here. THANK YOU!
February 6, 2025
Memoir of a female physician who has epilepsy. This story is compelling & it carries an important message, which is why it's unfortunate that it's written in a strange, stilted, contrived kind of style. Its phrasing is often awkward, annoying, idiosyncratic, or difficult to understand ("there was a bouquet of diaper creams arranged on the side of the changing table" "we traversed the immense rotating doors" "his salmon lips" "I watched the cotton tassels on her slippers pad down the hall"). Why not just say something in regular, ordinary language? Some of her observations often seem weird/odd & off the main track ("Mike took a generous bite of his pizza & a drop of amber-colored grease traveled onto his hand & down his forearm") .. why does she feel compelled to describe a disgusting, tangential moment like this, in the midst of sharing a serious conversation about her pregnancy? TMI!! Also ("I noticed beads of sweat forming on his broad forehead & flecks of spittle that flew far from his mouth with each consonant.") - Who cares?!? She goes on to describe how he wolfs down a Snickers bar & how his spittle contains bits of chocolate & peanuts! Why does she share gross trivialities this way? She also seems to characterize some of the people in her book in a backhanded or passive-aggressive manner (ie; "the Chair of the Dept of Pediatrics was known affectionately to some as the 'Ice King.'" - Affectionately?? She proceeds to present him as an intolerant hard-nose [after giving a completely unnecessary, paragraph-long description of his ritual for preparing his Crystal Light tea & continuously referring back to the appearance of the tea, as if its "luminescence" is a central aspect of her narrative?]). Very strange. I feel empathy for her from the very outset, but have to keep trying to rouse up that feeling again, throughout the many irritations of reading the book. This author seems to melodramatize her situation sometimes, making it sound as if her condition is almost crippling for her to deal with, when she's actually dealt primarily w/what sounds like absence seizures (perseverative motions without actual loss of consciousness). There are many epileptics who have to contend w/repeated, intractable, aggressive ("grand mal") seizures regularly, which completely incapacitate them or even threaten their life. The author experiences a few such grand mal seizures during the book; the rest are relatively mild, allowing her to sit in place momentarily immobilized, then resume what she's doing. Not to minimize her plight; but I'm gratified that she eventually expresses gratefulness for the relative mildness of her condition, after witnessing other more severe conditions during her pediatric neurology rotation in her physician role. She comes to understand how much worse things could be. Our family deals w/this disease firsthand & sees some of its effects, which for different people can at times be embarrassing, debilitating, or even dangerous, in some extreme cases. Dr. Seaborg has had fairly consistent seizure activity for many years; yet there are people who experience numerous seizures per DAY, on a regular basis over the course of their entire life. Imagine trying to get a job, start a family, or have a social life w/such dramatic interruptions to contend with. At times, I'm bothered by Dr. Seaborg's almost cavalier attitude towards her illness: she continues to drive (alone!), practice as a physician & raise 3 children, claiming these achievements as victories; but what about the risks? What happens if she's driving alone when one of her grand mal seizures arises? She says she gets an aura prior to her seizures, which gives her a brief warning; but what if there's not time to pull over onto the shoulder of a roadway, during an incident like this? And what happens if she's bathing one of her young children when a seizure steals her attention & the baby is left alone in the tub? I don't even want to think about the many disasters that could occur. I'm glad she's written an advocacy book & I agree that people w/seizures should be welcomed warmly into the larger community without undue bias. Still, responsible considerations should be taken for their conditions (ie; driving w/a partner or chaperone at all times; having assistance in the home as needed; etc.), so they can be sure their illness causes no harm to themselves, or others, while they seek the largest degree of freedom that is safely available for themselves. Some other lifestyle "rules" worth considering are things like: never swim alone; live w/a roommate or partner rather than by yourself; etc. These are some of the ways that our family handles things. It's good for people w/epilepsy to gain the most independence they can; while also considering what constitutes a prudent lifestyle for themselves & those around them. Freedom with responsibility. For example, I noticed that the Dr. mentions indulging in an occasional alcoholic drink; however it's widely accepted medical knowledge that this is a very detrimental habit for people w/epilepsy, because it lowers the seizure-threshold. It's also definitely contraindicated for use w/most, if not all, of the Rx AED's (anti-epileptic drugs) which are often taken by people w/epilepsy, to help them mitigate their seizures. (Dr. Seaborg took a number of these medications [sometimes concurrently], as noted during the course of her book). I feel the Dr. could present a better example than she does, especially considering she's identifying herself as an advocate, who is also a medical professional. She has considerable potential influence & I would like her to use it wisely, as there are many who will emulate her. There are a few times in the book where I feel her credibility is somewhat lacking (ie; as a physician who studied extensively while in medical school, she should've been well-versed w/all the medical terminology involved w/her illness, but during the course of her treatment, people explain things to her in the book that she should've already known. Maybe she just writes it this way in order to explain it to her readers; but she probably could express it more effectively). (Another example: while in the hospital, the author initially refuses to sit in a wheelchair, saying she's perfectly capable of walking, even tho as a doctor she should know this is usually standard procedure for patients in a hospital, to use a wheelchair. So why does she fight it?). She aptly & importantly depicts the many formidable, unfair biases experienced by epileptic patients in the wider community. She really captures my empathy at times, especially towards the end of the book, when at one point, in utter discouragement & desperation, she implores God, wanting to know where He is, in the midst of all her troubles?! I really like how she includes bits & pieces of her faith-walk within her memoir. You may have noticed by this time, that I'm quite conflicted about this book. On the one hand, it's a very commendable work; on the other hand it has some problematic aspects for me. On the whole, my moderately high rating is primarily based on the help that Dr. Seaborg's book may provide, to assist others who suffer from this frustrating illness. I salute her for her bravery in facing the world & fulfilling her ambitions in spite of contending w/her medical condition. Thank you, Dr. Seaborg.
June 7, 2022
Gut-wrenching memoir about a very tough woman. Well-done cover. Writer persevered through one difficult seizure after another. I white-knuckled my way through the writing about her brain surgery. Will never do this myself--too much to endure. The writing itself made the book easy to read, page after page. The author is a prime example of not allowing epilepsy to rule her life.
December 26, 2018
Insightful memoir, plus great education for loved ones
I found hope in this memoir. Dr Seaborg's journey illustrates beautifully what outcomes are achievable when addressed with hope, grace, and tenacity.
I found hope in this memoir. Dr Seaborg's journey illustrates beautifully what outcomes are achievable when addressed with hope, grace, and tenacity.
February 5, 2020
I want Rose to read this the next time she starts her "I Can't Chant." I was so moved by this memoir that I wrote an email thanking her. This amazing woman made it through medical school and motherhood with seizures. I am inspired by her strength. Hooray Kristin!
March 12, 2018
Moving.
Read
April 6, 2018Why
I liked this book because I could complete understand since I have epilepsy and hope more will read this book to understand
I liked this book because I could complete understand since I have epilepsy and hope more will read this book to understand
May 27, 2018
Interesting, informative, and real about what it is like to have epilepsy.
Read
July 13, 2019By my college and medical school colleague!
January 18, 2020
Really enjoyed how she told her story. Could relate with my son's experiences.
June 16, 2025
As a Nurse Practitioner and mom with epilepsy this book was very relatable. I wish everyone would read this book! So grateful the author was brave enough to share her story 🫶🏻
July 3, 2025
Interesting look at what it's like to live with epilepsy from a young age and into adulthood, medical school and starting a family.
September 8, 2025
Very helpful book to learn about living with epilepsy. The author is inspiring and admirable.
December 22, 2025
A well-written personal memoir of epilepsy. Inspirational, because the author managed to graduate from medical school and then somehow balance the stress of working as a doctor with a life-altering condition. I think she captured well the whirlwind that's experimenting with different kinds of meds, their combinations and eventually even brain surgery. The book read easily and in spite of the topic being quite serious, I enjoyed coming back to it.
July 22, 2024
Wonderful book
This book resonated with me so much. So much of my journey with epilepsy has paralleled Dr. Seaborg’s journey with epilepsy. Not enough people talk about it. Many thanks to Dr. Seaborg for having the courage to share her story.
This book resonated with me so much. So much of my journey with epilepsy has paralleled Dr. Seaborg’s journey with epilepsy. Not enough people talk about it. Many thanks to Dr. Seaborg for having the courage to share her story.
January 3, 2016
As I was reading this book it brought back memories of a family friend who lived on the charity of his family and others because of the crippling effects of epilepsy. He lived in times when there was only one medication available and that caused his brain to be dull. Although he cycled around the city, he never knew when he would get a seizure. I recall his excited anticipation of the kite flying festival in India. However, almost every year, being excited and out in the sun flying kites would result in him having a seizure. As a child, I didn’t quite understand this. As an adult one felt sorry for him.
Reading Kristin’s inspiring and informative story makes me think with great compassion about the millions like this gentleman who suffer the physical, emotional and psychological effects of ‘the sacred disease’ (so called because it was thought to be a punishment from the Gods).
Kristin presents her story as a patient and her insights as a doctor in a way that kept me reading the book right through. Her personal story of attempting to hide her illness and how she came to accept her illness, talk about it openly and deal with the effects make this book a must read for people who suffer epilepsy, their family and friends.
The inclusion of several factual pieces covering the history, perceptions, diagnosis and treatment reveal how many misconceptions and misunderstandings there are about this illness. I would recommend this book to everyone who seeks to overcome their ignorance of an illness that effects 1 in 26 people, so that we can be more understanding and compassionate towards those who suffer from epilepsy.
Read my review here: http://everydaygyaan.com/the-sacred-d...
Reading Kristin’s inspiring and informative story makes me think with great compassion about the millions like this gentleman who suffer the physical, emotional and psychological effects of ‘the sacred disease’ (so called because it was thought to be a punishment from the Gods).
Kristin presents her story as a patient and her insights as a doctor in a way that kept me reading the book right through. Her personal story of attempting to hide her illness and how she came to accept her illness, talk about it openly and deal with the effects make this book a must read for people who suffer epilepsy, their family and friends.
The inclusion of several factual pieces covering the history, perceptions, diagnosis and treatment reveal how many misconceptions and misunderstandings there are about this illness. I would recommend this book to everyone who seeks to overcome their ignorance of an illness that effects 1 in 26 people, so that we can be more understanding and compassionate towards those who suffer from epilepsy.
Read my review here: http://everydaygyaan.com/the-sacred-d...
November 4, 2016
This is a book that is for someone who is considering being a doctor or someone who wants to focus on epilepsy. This book describes Kristin Seaborg's life as she deals with epilepsy. She has had epilepsy her entire life and couldn't imagine life without it. She can dream of what it might be like to live without the constant fear that a seizure could strike at anytime of her day, but she doesn't know how it feels. She decides not to tell anyone about epilepsy because she doesn't want to be known as "the girl with epilepsy", or as the "freak", or people talking about her in general. She wants to keep it a secret so people can see that she is a strong person and be a role model to her patients. She became a pediatric, and likes neurology, but she is also a patient as well. She doesn't like living with epilepsy and thinks there is a cure for her. But after years and years of trying to cure it, there is no more tests for her and she has to live with it forever. Once she came to the realization that she's "stuck" with it her whole life, she writes a book about it.
I only gave this book a 4 because I personally didn't like how there was a history section at the end of some of the chapters. It was a great book, well written, and I liked how I could read how she changed into the woman she is today. It was interesting to read about her overcoming her obstacles and accepting her life with epilepsy. It was kind of boring, too, because it is an autobiography, and who really wants to read a book about someone else's life?
I only gave this book a 4 because I personally didn't like how there was a history section at the end of some of the chapters. It was a great book, well written, and I liked how I could read how she changed into the woman she is today. It was interesting to read about her overcoming her obstacles and accepting her life with epilepsy. It was kind of boring, too, because it is an autobiography, and who really wants to read a book about someone else's life?
February 2, 2016
I really enjoyed reading this book for several reasons. 1. I am amazed at the perseverance of people who are faced with disease/challenges such as these and have the strength to keep moving forward. 2. I really enjoyed the parts of the book that discussed real perspective, science, and quotes having to deal with epilepsy, I have learned from this book as well 3. I had tears at the end, good tears, but it was definitely moving to see her passion and comfort in advocating for her disease. I know others that are affected and I know it means a lot to all with epilepsy that there are people like Kristin Seaborg who are advocating for the need for epilepsy research. 4. I am moved by her relationship with her husband due to the overwhelming support. I too support epilepsy research this book made me even more aware as to why I do.
January 17, 2016
Reading Dr. Seaborg's book The Sacred Disease brought back many memories from this time. The looks from people, the stares... being treated like an experiment by neurologists all the while still being second-guessed that I had really experienced seizures -- I could easily empathize with her. I am so impressed by her willingness to share so many of her experiences and knowledge with us, the readers, when so many other physicians try to appear infallible. Which probably explains why she was treated so poorly by her peers.
Dr. Seaborg is a great example of what our doctors should be: human. The Sacred Disease shows how necessary it is for compassion and empathy to be a part of our entire community, including the medical community.
Dr. Seaborg is a great example of what our doctors should be: human. The Sacred Disease shows how necessary it is for compassion and empathy to be a part of our entire community, including the medical community.
October 9, 2016
Kristin is a friend and former colleague, and even though I already knew some of the information, hearing it fully in her own words was engaging and enlightening. She brings to light not only the struggle many people face with chronic illness, but also the struggle we all experience with balancing aspects of our personal and professional lives. Bravo Kristin, it is a beautiful telling of your own story.
May 13, 2016
I read this book one week after my 13 year old son was diagnosed with Epilepsy. Reading about Kristin's honest experience and journey with Epilepsy was truly inspirational. It was emotional as well as factual and informative. I learned many things I had not known yet about Epilepsy. I was left with a feeling of peace and hope after reading it.
March 25, 2016
i love it.........
Displaying 1 - 26 of 26 reviews