Contents
In line with its mission, the Editorial Board of MedTvoiLokony makes every effort to provide reliable medical content supported by the latest scientific knowledge. The additional flag “Checked Content” indicates that the article has been reviewed by or written directly by a physician. This two-step verification: a medical journalist and a doctor allows us to provide the highest quality content in line with current medical knowledge.
Our commitment in this area has been appreciated, among others, by by the Association of Journalists for Health, which awarded the Editorial Board of MedTvoiLokony with the honorary title of the Great Educator.
Epilepsy is the most common neurological disease. In Poland, 400 thousand people suffer from it. people. Only a few work, few have families. For those who live in the shadow of epilepsy, the disease is the epiagressor that takes away everything. For the reconciled, she is an epiphany to whom I am not ashamed to admit, but who allows us to live.
Symptoms of epilepsy
Joanna Bogdan, an attractive consultant of the Toruń HR consulting office, is one of the latter. Some epileptics have an aura, a set of attack signals, but her epileptic bursts in unannounced. First, Joanna feels her brain swell, pushing her skull open. Then comes sleep. It only lasts a few seconds, and when it passes, she lies on the ground with her eyes closed, limp, completely powerless. The body disconnects from the brain, which works at full capacity, but does not send signals to the arms or legs. Joanna hears voices, smells, sounds, yet she cannot do anything.
Everything is back to normal after ten minutes. Then the epi-friend leaves, and she can finally open her eyes, activate what has so far resisted. – The first attack appeared when I was studying theology at the Catholic University of Lublin – he recalls. – I thought I was fainting from too much work because seizures came during sessions or after sleepless nights. I didn’t care about them, especially since they disappeared for several years. They came back in Italy, where I worked as a carer for a woman suffering from Alzheimer’s disease. I had to go back to Poland because sudden fainting became dangerous for both of us.
Diagnosis: epilepsy
She did not know for a long time what was wrong with her. Doctors suspected cataplexy, anemia. They did dozens of tests, in addition to the basic one: EEG. They prescribed vitamins, iron, and even – preventively – some epilepsy medication. Even so, the attacks became more frequent and finally repeated daily. She was afraid to be home alone, to take a shower, to put on water for tea. Finally, one of the neurologists took the matter seriously, did a complete set of tests and diagnosed epilepsy.
Relief mixed with amazement. She associated epilepsy with convulsions, biting the tongue, rolling foam. Something much more spectacular than what happened to her. – I was 27 years old and I had to recreate myself: start to think of myself as chronically ill – she recalls. It was like going from one reality to another. At first in a literal way, because under the influence of drugs I started to have problems with the perception of my body. I misjudged the distance, ran into equipment that seemed distant to me, but it was right there, pouring water into a cup required almost prestigious skills.
How to live with epilepsy?
Within months, the brain tuned in to the drugs, but Joanna had trouble adjusting to the role of the victim. She was furious with epilepsy, laws that took away the right to a pension from epileptics, but she was also irritated by something called discrimination from within. – Everyone thought that I needed a stroking on the head, feeling sorry for my fate – he smiles. – I was also irritated by suggestions that only an epileptic would understand the other epileptic, advise him and solve his problems. It is very convenient, because pushing the sick to associations and aid foundations means taking the responsibility off yourself. This is a signal: don’t tell us, we don’t want to know, go to your own people with it. And I did not want to end up in the sick ghetto. That’s why I decided to always talk openly about epilepsy. This resolve was the building block of my new self.
Rage and opposition proved to be a good drive. Thanks to them, she started looking for a job and going to job interviews. At each, she spoke openly about the fact that she suffers from epilepsy. After six months of searching, she got a job in a personnel consulting company. – I immediately told everyone about my disease and how to act in the event of an attack – he admits. – The rule is simple: when I fall, don’t shake me, put something between my teeth, don’t pour water on me, don’t call an ambulance. When the attack wears off, I’ll just get up. Nobody seemed scared or surprised by this. Three years have passed since then. I meet with clients, I have lectures for several dozen people, stressful meetings with officials. Even so, I had 6 attacks during this time, all out of the office.
Maybe an epi-friend gives life because it does not irritate her: she takes medication twice a day, tries to get enough sleep, avoids discos with pulsating strobe lights and fireworks shows (they have a negative effect on the flow of brain waves). Joanna is sure of one thing: if she stayed idle at home, the disease would be stronger, she would score more points. And this is a draw.
Everyday epilepsy
Małgorzata Lisowska, the head of the “Joy” Association for Equalizing Opportunities in Lublin, an office and sales employee and negotiator of a company producing skirting boards, lives in harmony with her epiphany. Long-haired, with the figure of a model, she doesn’t remember life without epilepsy. She fell ill with it as a two-year-old child, just after falling off the table. As a child, she went through the epileptic torment: wandering around hospitals, testing new drugs, surrendering to the toxic care of loved ones, discrimination at school (one of the teachers said that she was afraid of her and should not go to state school). Like hundreds of other epileptics, she was quickly cured of her dreams. The doctor taking care of her said that she would not be able to work in her desired profession of chemist, because it was work with glass measuring glasses and test tubes. – Fortunately, I had a plan B, pedagogical studies – smiles Małgorzata. – I moved from home to the other end of Poland, to live in a dormitory. I have started all over again, and epilepsy does not like sudden changes. The attacks intensified.
More and more often she felt that some force was taking control of her body, at the same time tearing her left hand and leg, throwing her to the ground, tugging regardless of whether there was a soft carpet or asphalt under her feet. After such blows, there were wounds and scars. She passed exams with stitches on her face, with a bandage on her head. She was able to give up, return home, but found that independence gives her more strength than overprotection of loved ones. She agreed to test a drug for epilepsy, found a sponsor for an expensive treatment, finally won state reimbursement of the drug and graduated from university. Compared to what she’d been through, applying for a job seemed child’s play. She applied to a recruitment agency. She made no secret of the fact that she was ill and that she did not expect miracles, but after a few days she got her first job: to look after a sick old woman. After a few weeks, another, more serious offer appeared – a job as a teacher at the County Family Assistance Center, consistent with her education. – For four years I helped, among others single mothers, children, victims of domestic violence. I warned you that I was sick. I said that if the attack is stronger, it is enough that – when I am sitting – they will hold my arms. If he appeared outside, it would be enough for them to, for example, sit on a bench with me – he recalls. Epilepsy did hit me from time to time, but it wasn’t a problem for my inmates. For the management of the Crisis Intervention Center – yes. After the center became independent, I was released.
How to live with epilepsy?
For those who do not agree with the epiagressor, dismissal is a blow after which they rarely recover. They lock themselves in their homes, separate them from their former acquaintances, and confirm that they are inferior. Małgorzata felt worse only for a moment. After a moment she thought: You are firing me, your loss. She sent out hundreds of CVs, called with job inquiries. Only one of hundreds of employers said epilepsy was not a problem for him. The rest hung up on the news about the disease. – For several months I have been building a network of skirting boards distributors – smiles Małgosia. – It’s a new but fascinating job for me. The little friend of mine is also happy with him, because he has been giving me life lately.
Bow. Roman Chwedorowicz, a specialist in neurology, admits that few patients, such as Małgorzata or Joanna, openly admit to the disease. “Epilepsy, especially by the older generation, is equated with an alcohol problem,” she says. – For many people it is not only the result of a bad lifestyle, but also something embarrassing and dangerous. Among them are also potential employers. They are not only prejudiced but also afraid of the sick. They believe that epilepsy will prevent them from fulfilling their duties, and yet the disease has no effect on that! One of my patients successfully graduated from university, was the president of a joint-stock company, and recently became the owner of an advertising company with millions of profits.
Roman Chwedorowicz admits that work for epileptics is not only a way to support themselves, but also an additional therapy. If they don’t have it, he sends them to an occupational therapy workshop. And he constantly emphasizes that speaking openly about the disease is the beginning of the victory over the epiagressor.