Stigma Revisited (updated)

Stigma Revisited, October 9, 2008 The prim office worker smiled as she spoke, I am sure she did not even realize that her words cut through me like a knife. “You look perfectly normal, though!” She had been so nice when hearing of our struggles with my son’s epilepsy. Her understanding seemed genuine as she was filling out paperwork as my daughter had her own dental work done. I told her, as I often do, the statistics of epilepsy and its impact nationally and internationally. I went on with my 3-minute “elevator speech.” The scenario is very typical for me to speak up when given a captive audience. She was very interested, amazed, and compassionate. She admitted having no idea of the prevalence of epilepsy. When I got to the fact of 200,000 new to diagnosis, I shared that I was one of those people new to the diagnosis in 2006. The smile on her face evaporated as the next statement slipped past those pleasant lips stunning me,” But you look so normal!” It took me back to all the former conversations I have had regarding my son as well, “but he LOOKS so normal” I wanted to have some cutting remark for her, I wanted to sound angry because of all that we had faced. Instead, my reply was simply, “OF course, I am as normal as you are! I just happen to have seizures a medical answer for what I was mistreated and misdiagnosed with for over 12 years. Now I have proper treatment and I am thankful for this!” Now I also have STIGMA but then again, I have been fighting the stigma of epilepsy for over a dozen years so it is nothing new, it just is my own as well as my son’s. Flashing back to one doctor visit for my son, our beloved doctor smiled and tried to convince us that a diagnosis of NES, non-epileptic seizures, would hold less stigma than that of epilepsy. My husband and I remained almost speechless and I believe breathless for a moment. The doctor, one I do highly respect, but one always wanted more data, more evidence, than testing was able to prove for our son. He was trying to tell us that withholding information from others was within our control. I tried, in a halting fashion to tell him that there is a stigma in NOT telling what is going on with individuals. When you have a child or teen with a medical condition it is not an option to go 6 years telling no one what he the condition is. There are permission slips that need to be signed or he cannot participate in activities. My son has an ongoing chronic condition. He knows that the same condition he once had a clear diagnosis for is continuing. Just because the doctors removed the diagnosis, and new doctors did not want to “label him” for a variety of reasons. The condition did not become easier to handle. Coping with NES and the mental illness connotations is difficult. We had treatment and response to the medications and this is what we needed. Depression increased by doctor’s lack of belief was hardest to cope with for all us. Confusion grew because the need to continue to prove the symptoms of seizures through less than perfect testing caused frustration. Anger when inaccurate descriptions in charts caused continued failure in treatment. The trauma of STIGMA the need for an accurate diagnosis, rather than doctors believing treatment is sufficient, rather than understand need for quality of life. A diagnosis of epilepsy affects the entire family and the dynamics. When my son was a young boy, newly diagnosed with epilepsy, I did not think about not telling anyone of his medical condition. His first neurologist was so adamant about restricting him. “He is not to climb trees, no bathing alone, no bike riding, no swimming” the neurologist told us. I was stunned! I was a gym teacher at the time, family fitness a key part of my family’s daily life. “Bike riding, swimming together as part of my arthritis therapy” I told this to the bespectacled friendly neurologist. He looked sternly at me and just said, “Not anymore!” Since I am in charge of rules in my family, I strictly adhered to this! I made S so miserable, and myself a nervous wreck! Looking back, it made no sense since most of his seizures were nocturnal and not one of these rules made him safer at night! That overly cautious doctor did not give guidance for nighttime safety. First thing we did was to try to seek alternatives for fitness and fun. We began kayaking and walking more. None of us biked for a year, explaining to his older sister that it was only fair to S. I am sure you can picture her sweet face turning sour! Of course, I would find him at school at the top of a swing set pole, "Mom, this is NOT a tree!" His humor may have been intact, but mom was frantic at times! I should have realized then that I could not wrap him in bubble wrap and keep the boy in him from all harm. I did lighten up, some, after a year. We did say he needed to have a more normal life! The seizures were not going away. Sadly, the restrictions this doctor gave us did bring on STIGMA, his "friends", boys he had known at church since birth had been told be needed to be careful not to bump his head, to them this meant, TARGET. For the next five years, he was the target of bullying. No matter how we tried to educate them, their parents, coaches, teacher at Sunday school, bullying continued. School was never a problem, but the problem remained at the church. Nothing seemed to help. By the time Seb was 13, it had intensified to the point where they were punching him in the head and taunting him calling him "spaz boy,” seizure boy, taunting him to Spaz out. Even then, some in leadership did not see any reason to intervene with a HOPE Program. When S told what was going on to a Senate Health Legislative Aid, in front of our EF Affiliate she asked why I had not held one. I went back to this church and said either I have one or she will. Eventually, after pastors tried and I tried, speaking to the parents we did have a program and one family showed change. We had explained that they would probably not recognize his smaller seizures. Stigma S when the epilepsy center took him off medications saying he would outgrow at age 11. This was one of his worst stigmas. S was sure he was going to die at this point! He was only 11. At the age of 9, on Depakote he told me that he was told me “I am sure I am going to die young. Is there a way for doctors to preserve his organs in case his sister needed a kidney or other organ?” His neurologist assured me it cannot be the medication causing this or depression, Mrs. M. Depakote is used, as a mood stabilizer. Doctors need to listen to parents and to patients. Doctors, this is stigma when you fail to hear us! A medication that stabilizes one person destabilizes another. We left that church when our youth pastor moved on and went to a new job. Things were so different and he felt wonderfully accepted. Then he had a major seizure in this church .He recovered, after 5 minutes or so, got up to the seat sitting there through the rest of the service, terrified that his acceptance would be all over now, that STIGMA would return. He had never had such a long seizure at the last church and was sure all his friends would abandon him now. Instead, after the service, a few gathered around him to ask how to take care of him if it happened again. They casually joked with him, “S, you scared us, do NOT do this again.” But showed deep concern for him and remained his friends! After the seizure at our new church, he continued doing all right with friends, for the most part, but after a medication change, the depression started crashing in, seizures worsened, two “friends” started to push away more, and more. These two had slowly been isolating S from the rest of the group. When S had tried to commit suicide, in part because of the medication the neurologist chose. One of these friends told him the “proper say to slit his wrists,” This young man has since apologized. The girl of the two has not. These two spread rumors that S had been faking his seizures. They may have had the info from another who had been with us at an appointment when the doctor had mentioned PNES and the fact we had not yet proven seizures enough. Stigma. (The appointment had been just after the first suicide attempt and the doctor’s sarcasm shocked this mom and dad!) We went trying to go over charts with abnormalities shown! 2 weeks later the second suicide attempt occurred. (he was 15) Stigma had already hit a previous generation when my husband’s uncle severe epilepsy and was treated in a state hospital. He was severely burned during a grand mal seizure up against a radiator while no one was watching him. His mother came and found him in a horrible condition. Dillard also kleptomania, but his mother was told it was part of his epilepsy. “He is a sick child.” Epilepsy and mental illness being almost synonyms little help for him was given in the dark ages of “care.” (Epilepsy is NOT a mental illness!) Dillard died in his mother’s arms in a seizure that lasted 2.5 hours. His sister was only 14 when he died, Dillard was just 19. My mother- in -law never wanted children until she was assured that Dillard’s epilepsy was not genetic but caused from delivery with forceps. I have no concern if it was genetic or not, I would not regret having my son! We have a grand niece who had seizures. Dillard’s mother had possible seizures after a stroke at age 80-death at age 92. His niece has an abnormal EEG. (My sister-in-law). My husband had some febrile seizures. My grand niece has febrile seizures. Yet my sister-in-law told her daughter that his daughter’s daughter, my grand niece had no family history. Hiding family medical history is stigma when you hide family history when it is medically necessary. My mother-in law has said she would not have had children if she were told it was genetic. She said this over and over she was so traumatized by her brother’s epilepsy. My husband is her son, a child she is proud of and loves dearly. I have tried to express that there is never any blame from us. We have never been told S’s seizures are genetic. Still she says this repeatedly as if she has to, maybe for herself. When my children wrote books at age 10 and 12 about their views of epilepsy to take to Washington, DC, their Grandmother did not like them. It made it almost seem real, she said. I could not speak to her about this, turning the phone over to my spouse and taking the children for a walk. We had just gotten home from a grueling MRI with our son at that moment when she had called. This is stigma when a beloved Grandma did not want to face what we are going through as real. She has been there for us and is now a great support. It was just how she said this as if what we were going through as if it had not been real all those years. We have faced lost jobs, lost friends, financial struggles, family strains, pulls, pushes and bullying and brutality. Words fail to express the pain fully. Would I back off from speaking out? Would I do anything differently? NO, let me explain. I do not feel that I have to change, I KNOW I have to change the world to accept epilepsy! It is time that we come out of the closet. Some doctors do not seem to understand. I have seen this. I have tried to tell one of ours that even though I fully respect his clinical knowledge of the medications, the mechanism, he needs to understand our knowledge of seizures from the inside! We know and understand their effects because we live this life! S and I both do and have for well over a decade. Maybe it is time more of from the epilepsy community can work as a team. I know that people separate from the epilepsy community may not us understand us if we do not speak about epilepsy. If we keep it all a secret, if we allow the mold to grow, of the pain to fester, it gets worse! Tony Coelho twice has shaken S’s hand and told him “do not be afraid to speak out about your epilepsy” I have to remember this and DO it! I have lived it and plan to continue! I cannot go back and say to him, “But, our Epileptologist thinks we SHOULD be concerned!” What do you think, Should we be afraid or can we be united in speaking up. I want to break this stigma. It has reigned too long. We need to take charge too long. I will not be afraid because a doctor thinks I caused stigma because “I thought my son had epilepsy” I KNEW He had it because he was diagnosed!” October 2009 update, Sam was re-diagnosed at the age of 17. We must change the thinking of the world that thinks people with epilepsy are one set thing. People with epilepsy are people. Many shapes, many talents. Many needs, abilities, we come in all shapes sizes and will amaze the world. There is a lot of education needed and we are the best experts. We know epilepsy from the inside. Come break the stigma with me please! In 2010 I contacted this doctor one last time because his words continued to haunt me and I told him this. I asked him if he might clarify why he believed I had caused S’s stigma. His reply was, “ I regret that words of the past are haunting you. We should both move forward since S is no longer my patient. My past words should no longer be given any importance. Also, you should feel free to disregard them. You have disagreed with my statements and assessments in the past, and it is entirely appropriate for you to continue to do so. I think that it is fair to say that both you and I have expressed ourselves based on what we felt to be our convictions and the best of our knowledge.” In other words, he gave no answer for how I caused my son to be punched in the head because he had a chronic illness. This doctor is one I had great respect for and told him multiple times during and after the course of our working relationship. Perhaps he is of the school that silence is better. How he believes a patient and family can live with this disorder in silence is something I cannot fathom. The world needs to learn, apparently so do some doctors. He needs to take a walk in our shoes. Thank you, GM The doctor’s name, location, children’s names all withheld for everyone’s privacy. I do not want other patients to be upset by his words. I hope that the doctor has a great understanding of stigma overall than he demonstrated with us. He is an amazing doctor. We sometimes had great working relationship with him. I think that is why his words impact me still today and I wanted clarification. For him to say today, “just disregard them” feels like someone who is clueless still. I still want to give him a walking tour of our lives. This is not because of lack of respect, but because I do and wish he had the understanding to pass along to other doctors. If the doctors do not understand how to CHANGE stigma, I fear we may never do so. city withheld August 1, 2011 I finally had the chance to speak to this physician. He does not recall any of these conversations or the emails about S or stigma. He thought that it was about an appropriate diagnosis. He now says that he is in agreement about bringing the world into awareness of what epilepsy is and what it is not. I asked him what he would do if it were his child and for a period of 6 or 7 years the diagnosis was not clear yet he had to sign papers for his child to attend activities such as camp, gymnastics, etc. What would he do? It took a few repetitions before he understood and stopped saying, “well you could…” no what would you do because this is your child….he finally said that he would put down seizures if I believed that is what it was…I then talked to him about much of what is written here and he seemed to understand and agree that we do need to change how the world view epilepsy and not hide the information. I do not mean to portray anyone negatively. This is just a re-telling of what occurred. We all learn as we go through this phase of treatment and life. Hopefully without harm or much harm to others along the way. Copyrightgm2009 all rights reserved.