Stigma: How have you dealt with it?

By Dr GaryCA Latest Activity December 4, 2010 at 10:31 pm Views 3,021 Replies 8 Likes 2

Dr Gary


In my role counseling patients and families facing chronic illness, I recently met with a young man of high school age and his father. The young man, who I will call "Mike," was part of a clinical trial program for a new epilepsy treatment. He was experiencing seizures on a daily basis.

As I talked with Mike and his father about his experiences with epilepsy, I was reminded of an experience from high school. One afternoon, a student suddenly feel out of his chair during a class, and began having a grand mal seizure. To be honest, like others in that age group, I was both terrified and fascinated. Fortunately, the teacher had been briefed as to what they should do. The student quickly recovered. What I remember was the look of shame and embarassment on his face, and the responses of other students, some of whom were unsupportive, to say the least.

My clinet Mike talked about what it was like to singled out as being different at his high school, and some of the names that he had been called by other students. He was also concerned that teachers might be hesitant to have him in class, for fear that he might have a seizure and they would have to deal with it. He knew that he had been the topic of more than one faculty meeting.

Mike's dad had personally educated his teachers, but was still concerned that Mike be safe at school, and not be mistreated by other students.

We talked about how Mike could deal with the stigma he faced at school, having a strong support group, learning when to respond to and when to walk away from intentional and unintentional displays of ignorance, and building up his self-image.

If you are living with epilepsy, have you experienced stigma? If you have a child with epilepsy, has he/she experienced stigma in their interactions with students or teachers?

Please jump in and talk about any experiences you have had. Need some support? Some ideas for how to cope?

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Replies (8 replies)

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  • riverkings
    riverkings December 7, 2010 at 12:50 pm   

    That is a hard one to figure out how to put it in words. As a mom of a child with epilepsy that is non verbal and severely delayed I have not had to deal with how to help her cope, because she lives in her own little world. I have experienced being at the mall and her seizing and watching peoples reactions, from moving to a different part of the store, staring, and rarely someone actually asking if they could help or asking more about her personally. I worked with the epilepsy Association for several years, going to elementary schools with a puppet show to teach kids about seizures and what to do if they see someone have a seizure. Knowledge is empowering and I heard back a couple times from kids at the school that they weren't teased as much once the other kids understood more. For me getting involved with the Epilepsy Association and teaching kids is what helped me cope. knowing that I wasn't alone and finding others who could relate and understand my feelings and frustrations is also a big key. Nothing is harder than a challenge when you think that you are all alone and their is no one to talk with or understand.

  • thegizzard
    thegizzard December 22, 2010 at 4:31 am   

    My experience with stigma is very unfortunate. I worked in a hospital, of all places, and began having seizures from the stress. No one, doctor, nurse, or staff member, had a moment of encouragement or understanding. And this was a teaching hospital! I have never felt so alone in my life. I would love to give a talk to medical students about what it's like—and not like—to live with epilepsy! Young doctors simply don't understand the disorder unless they specialize in neurology.

    You are most assuredly not alone in your frustrations and feelings! Although my experience was very different from yours, I did go through very similar emotions. I worked on an infectious disease floor, and no one was a pariah there except for me. People ran for cover when I had a seizure!

  • Dr Gary
    Dr GaryCA December 22, 2010 at 6:32 pm   

    Thanks so much for telling your story. I read it with sadness. It really is amazing to hear that this level of ignorance around epilepsy persists, and in a hospital setting, no less. So often when people don't know what to do, they do nothing, if not run in the other direction. Education is important, of course, but you have to get people to hold still and listen first. Clearly, some education is missing in your hospital and, I would suspect, at most others. Another reason why it is so important for people with similar experiences to share their stories, and support. I totally apppreciate that you took the time to post about your experiences. Stay close and keep us posted!

  • MissPuff
    MissPuff March 1, 2011 at 4:52 pm   

    Hi Dr. Gary & gizzard,
    I just had the unfortunate experience yesterday of a doctor's ignorance. No, let me go back 8 months agol My family doctor suspected I was having seizures because I felt like I was getting shocked a lot, I had times when my body would stiffen & I felt like I would explode, and some other odd things. I had been told about 15 years earlier that I had a seizure disorder, but the neruologist never explained anything about it & after 12 years, he went to work at a hospital with only inpatients. I never thought anything more about the "seizure disorder" & stopped my meds. Within a couple of years, I started having odd symptoms, bringing us up to 8 months ago. My family doctor sent me to a new neurologist. I explained my symptoms, told him my family doc suspected seizures & he asked if I lost consciousness. I said I didn't know, that I have in the past, but I don't think so recently & he said if I wasn't losing consciousness that I wasn't having seizures! Anyway, he ran a 24 hour eeg - extremely active seizure activity. We have spent the last 8 months trying to get them under control, unsuccessfully. I have 8 types of seizures, possibly one more type. I am now being hospitlized this coming Monday for a video eeg. So there is a neurologist's ignorance.

    Yesterday, I was having a spinal epidural & right in the middle of it I had a simple partial motor seizure, a pretty strong one. The doctor asked why I was nervous. I told him I wasn't nervous, I was having a seizure & to just finish the epidural. In the recovery room, he came in & said I didn't have a seizure, that when a person has a seizure, they can't communicate & they don't remember what happened. I told him "I have epilepsy with 8 known types of seizures out of 40 types. Of those 40 types, only a few leave a person unable to communicate or remember the event." He started to agrue, but the nurse stopped him, saying "You DON'T EVEN want to go there." So he walked out. I think the nurse had some experience with epilepsy.

    So, there is ignorance even in the medical field, even from someone who treats epilepsy! But I educated myself. By the time I went back to the neuro's office, I was able to define "seizure disorder" and describe & name all the types of seizures I have & in doing so, I gained his respect. The pain clinic doctor - who knows. I don't think anything will change his attitude. In his mind, everything is the result of anxiety.

    As far as dealing with people in general, I guess I've been blessed because nobody had shunned me or ran away. Just the opposite, they come & ask questions, they want to know what happens to me & what they should do, if anything. I wish all people were that way. People won't run away from someone having a heart attack, so what's the difference with a different health issue?


  • Dr Gary
    Dr GaryCA March 1, 2011 at 6:09 pm   

    Hey Sheila,

    It is great tp hear frpm you! I really appreciate that you took the time to tell about your experiences.

    I am sorry to hear that you have had so much difficulty getting the treatment you need, not to mention just getting doctors to listen to you and to respect your knowledge enough to actually consider that you might know what you are talking about. It's amazing that someone who treats epillepsy would have such a limited view.

    Sometimes it seems that doctors, while specialists, seem to see patients who follow typical patterns in their condition, and so they don't really expand their awareness beyond their own experiences. So when a patient presents symptoms that are outside of their day to day experience, they assume that the patient is wrong. To be honest, I think that doctors can get defensive when their patients advocate for themselves. In your situtation, your doctor may have been feeling this way, and the nurse may have also seen this going on.

    What I think also happens is that doctors treat a wide range of conditions, and they aren't always aware of all of the potential symptoms, nor the treatments, of conditions that come their way.

    Your story really illustrates the importance of being as knowledgeable as possible about your condition. Patients really have to be empowered, to know their symptoms, to have an idea what they mean, to understand the potential treatments. And they need to know how to speak up and make their healthcare professionals aware of their concerns.

    It seems to me that patient empowerment is becoming more a requirment in our current, and future, healthcare system.

    You are really an example, and inspiration, for other patients who are dealing with seizure disorder. And I am also glad to hear that the people you are encountering in your daily life are treating you with concern and compassion. There are a lot of good people in the world.

    Thanks again! I will be thinking about you as your additional teslting comes up on Monday. Please keep us posted!


  • MissPuff
    MissPuff March 1, 2011 at 11:37 pm   

    Thanks Gary. It has taken me some time to learn to be my own advocate, but I'm getting better about it. I appreciate your point about the reactions of different doctors. For instance, my neuro deals more with other neurological disorders & not that many epilepsy cases, so when I first came to him, he didn't want to accept what my family doctor suggested, even though I had previous diagnoses of seizure disorder - he just didn't have those records. So I can see where he would be a little reluctant, but by his profession & specialty, he should not have reacted by saying I wasn't having seizures before he even ran the 1st test. At least now he respects me for my knowledge, asks me what I think about a treatment & acknowledges his limitations & is having me see an epileptologist. And my husband & I really like the epileptologist. I took him an epilepsy diary & printed out a list of the types of seizures I know I have & how they present themselves. He was very grateful to have them & thanked me. He seems to be one who encourages patients to educate themselves.

    As for the pain management doctor, I really don't know what his problem is. Of course he is an MD, not a specialist & probably had no training in dealing with epilepsy. In his opinion, every reaction or problem from his treatment is the result of anxiety. But even an MD should realize there are MANY other health issues that can come into play with his treatments & shouldn't act like he is God Almighty, all-knowing, treating his patients without dignity. I think he didn't like me to stand up for myself. The previous visit, I didn't stand up for myself & even the nurse didn't stand up to him. She just told me the doctor was wrong after he had left the room. Maybe my standing up to him this time gave her the courage to stand up to him as well, because she has seen his treatment & attitude toward his patients for a long time. And I suppose he did feel threatened. But I think he needed to be brought down a notch, to be taught that some patients know a lot about what they are dealing with, especially when they have been dealing with it for a very long time.

    I hope I do encourage others to be their own advocates. Sadly there are so many families in denial of a family member having epilepsy. If an epileptic can't stand up for themself in that case, who will. And if they can't stand up for themself, how can they ever expect their family or friends to ever understand & be a real help to them. In my case, my doctors wouldn't explain what was going on, so I couldn't explain it to others. Educating myself was the best thing to do. Now my doctors know I am aware of what is going on & so do my family & friends. So I say absolutely learn all you can. Only then can you get others to learn as well.

    I'll let you know how things go with my video eeg. I was told it will be a couple of weeks before they have the results on it. Maybe the epileptologist can find something to work. Thanks again, Gary. Talk to you later.


  • Dr Gary
    Dr GaryCA March 2, 2011 at 9:04 am   


    I am glad to hear you are going to see someone who really specializes in epilepsy.

    I always try to encourage clients to work with someone who truly specializes in their specific diagnosis, if at all possible. For example, I encourage clients facing cancer to work with an oncolologiist who only treats their specific kind of cancer, e.g. breast, or at least primarily treats that kind, and even who mainly performs their specific treatment. Medicine is so complex, there are so many options. Doctors can't possibly be experts in everything related to their speciality

    However, as you said so well, they aren't always willing to admit that. So sometimes patients and nurses have to do a little hand slapping, and a little education. Again, glad you stuck up for youself.

    Pain management, as you said, is another good example of the limitations of what a doctor can know. I find that so many pain paitients end up having to take a trial and error approach to managing their pain, with both treatments and doctors, until they find the right solution. I hope you can find a way to work with yo pain management doctor, that he wiill listen to you and see you as a partner. You are the expert here!

    And you're right. Patients need to be experts in their condtion, educating themselves, their families, their healthcare team. The lack of understanding of epilepsy is still out there, isn't it?

    Again, I hope things go well for you. I will look forward to hearing how you are doing. Take care!


  • Dr Gary
    Dr GaryCA December 8, 2010 at 9:55 pm   

    Hi! Nice to (virtually) meet you.

    It must be very difficult for a mother to be in situations in which her child is in crisis and the bystanders are either staring or running away. I suspect that, among the gawkers, are individuals who would be willing to help but don't know how, or they assume that you would rather they not be involved. So they stand by looking as helpless as they feel. Or, maybe I am just too generous in giving them the benefit of a doubt.

    I agree that educaton is power. When children, and adults, receive some basic education on a health condition, they are more likely to understand the perspective of the person who is living with it. Children can be especially cruel when they don't understand something, as you said. I remember, as a child, when one of my classmates was diagnosed with diabetes. A nurse came in and explained what diabetes was, and showed us the syringe.

    It's reallly great that you have taken the time to education children about epilepsy, I can see why it would be a healing experience for you, and provide a chance to bond with other parents as well. We get so much back when we give.

    Thanks a lot for jumping in here!