Can an epileptic’s attitude toward life affect treatment?

  The fear of seizures is one of the major reasons why epileptic patients and their families often live in the shadow of the disease, and the fear of facing up to the disease and low self-esteem is probably the most common factor.  In the same chronic disease, patients with diabetes and hypertension will be relatively much more confident. Patients or family members will take the initiative to tell relatives and friends about the foods that patients need to avoid, and those with the same disease will also exchange treatment experiences and introduce each other to doctors, drugs, and folk recipes.  However, epileptic patients do not do this.  Case 1: The patient is a young woman who developed epilepsy 10 years ago. The patient had been working in the city, but returned to her hometown 400 kilometers away for treatment, which was not well controlled for 2 years before she was finally referred to my clinic. I went through 2 years of “struggle” with the patient: at the beginning, the patient was resistant to taking medication, which led to intermittent treatment, and the patient kept pestering me about whether she needed to take medication or not. After a long period of patient persuasion and the painful experience of many grand mal seizures, the patient was finally willing to take the medication seriously. Since then, she has been seizure-free for 6 years, and has experienced pregnancy and childbirth during that time, and her child is now healthy. We also became friends because of our long-term communication. Recently, her sister developed similar seizure symptoms, and she asked her sister to see me, but called ahead to inform me not to tell her sister that she had epilepsy. She said: For 10 years, only her parents and husband knew that she had epilepsy!  Case 2: The patient, also a young woman, had been ill since childhood and had been treated with medication, or secret folk remedies, in outside hospitals, with poorly controlled symptoms, and then referred to me. Subsequently, the patient has been treated in my clinic for more than 1 year. Except for the first time she came in person, her mother came to get the medication for her afterwards: she told me about the seizures and adverse reactions, and I adjusted the medication. When I asked the patient to come for a follow-up visit, her mother said: she was afraid of being seen by her acquaintances to see her for epilepsy. I told the family that epilepsy is a reimbursable disease in the medical insurance catalog and they could apply for it, but the family refused my kind offer, saying that they would rather not be reimbursed than to let others know that their daughter has epilepsy.  The above cases are not uncommon among my clinics.  In the old folklore, epilepsy was called: “sheep epilepsy”, a disease that has always been evil, mostly regarded as imbecile and inherited from the next generation. Patients were discriminated against, and if they were diagnosed with epilepsy, bad luck such as dropping out of school, unemployment, and divorce would ensue. Recently, I had a female patient who started to have seizures in junior high school and was treated in our office. After she got pregnant and got married last year, her seizures suddenly increased, and she had seizures almost every night, and her medication kept increasing, but the effect was not good. I later asked her in more detail: it turned out that she had never disclosed her condition to her husband, and every time she had a seizure, she used the excuse that she had a sleep disorder after pregnancy to cover it up, and that she had to hide from her husband to take her medication. In such a situation, it is strange that “psychogenic attacks” do not occur.  What I want to discuss here is that the public has misconceptions about epilepsy and it will take a long time to change the status quo, which cannot be changed by the patient alone. As a patient, I can’t resist the world’s perceptions, but if I can’t face the disease, others will not. If you can’t face the disease, it is easy for people with bad intentions to take advantage of the situation. Patients with diabetes and hypertension are less susceptible to bad publicity because they are more likely to communicate with others and have their disease under control. Epilepsy patients are easily misled because they do not communicate with others and do not have complete information about diagnosis, treatment, and lifestyle habits because of their “secrecy”. I really empathize with and feel sorry for patients who have been deceived and come to see us.  For example, first-time patients are often nervous, worrying about what serious disease they are suffering from. Can they be treated? Is the treatment effective? And so on. If the doctor is inexperienced or selfish, he or she may be swayed by the patient’s anxiety or take advantage of the patient’s anxiety to mobilize the patient for hospitalization and many tests. If the patient has knowledge of the situation, he or she can refuse unnecessary tests, or will not waste time and money on hospitalization. Today there was a patient with suspected epilepsy, but the doctor only gave him a cranial MRI + MRA, not even an EEG!  Another example is that after the patient is examined, the results also need to be analyzed by an experienced doctor. The results will be interpreted differently in different people’s eyes. This time requires good communication between the patient and the doctor, and again requires the patient to have an open mind, and an understanding of epilepsy.  Therefore, I suggest that when you suspect you have epilepsy unfortunately, you need to keep a good attitude and learn about it at the same time; if you are diagnosed with epilepsy, you do not need to be inferior or discouraged, but face it positively and do not let your attitude affect your treatment.