Self-management of epilepsy patients’ life
Patients with epilepsy should understand their condition, cooperate with doctors with a positive mindset to obtain the best treatment effect, and be able to cope with difficulties in daily life and actively participate in society so that their quality of life can be improved and they can live, study and work like normal people.
I. Four key points for successful self-management
Effective self-management involves the patient’s level of knowledge about epilepsy and care, the patient’s self-awareness, self-confidence and responsibility in four areas.
1. Knowledge of the disease and care
Patients with epilepsy should understand the basic knowledge related to epilepsy and be able to use this knowledge to their advantage, knowing how to take better care of themselves. Do your best to maintain a spacious mood about your condition. When you are unsure about certain conditions, you can consult your doctor in a timely manner, or you can obtain epilepsy-related knowledge through the Internet and other means. In addition, you can share your experiences with other people with epilepsy so that you can gain more knowledge and can feel less isolated.
2. Self-awareness
The way patients handle their condition can affect how they feel and how others view them. If you tell people “I am an epileptic” as soon as you meet them, you will be in a lot of trouble if you carry this label. Patients should not have a self-consciousness of “I am an epileptic”, but rather a sense that I am a normal person.
Epilepsy can change how a person thinks, feels, and acts. Likewise, thinking, feeling, and acting in ways that can change the symptoms of epilepsy. Many people with epilepsy know that their emotions and feelings often influence their seizures. Therefore, they should learn to think positively and control their emotions in order to reduce the number and severity of seizures.
3. Self-confidence
Self-confidence plays a very important role in the patient’s self-management. People with epilepsy often encounter many troubles, but do not use the fact that they are epileptic as an excuse. For example, “If I were not epileptic, I would be a general manager, or would be a famous model,” and so on. Do what you are supposed to do, and never use epilepsy as an excuse to vent your frustrations and distress.
It is true that if you did not have epilepsy, you would not have many troubles, but the most important thing is how you deal with them. As a patient, you should approach epilepsy as positively as possible, focusing on “what I can do” rather than “what I can’t do”. For example, when a patient is unable to drive because of epilepsy, he or she should think of it this way: if he or she does not drive, he or she will not have to worry about traffic jams, he or she will have more opportunities to exercise, he or she will be able to take a taxi, and he or she will be free from the risk of injuring himself or herself or others while driving.
4.Responsibility
Once patients are fully aware of their condition and are being actively treated, they should have the responsibility of taking care of themselves. This includes the following aspects.
(1) Actively cooperate with the doctor, follow medical advice and take medication, and be clear about the role of the medication taken and the reasons for taking it.
(2) Be sure you know the triggers for epilepsy. Stress, fatigue, boredom, lack of sleep, excessive alcohol consumption, and many other factors can increase the risk of seizures; know these factors and try to avoid them.
(3) Make a list of jobs and pastimes you can do (including safety measures you must take) and list which jobs are unsafe.
(4) Understand traffic laws and avoid driving if they state that people with epilepsy should not drive. Patients should understand that driving during seizures is very dangerous for themselves and those around them, and should learn to value life.
How do I tell people around me about my condition?
Patients must tell some people about their illness, such as good friends or people around them who are close to them. The best way to tell is to be truthful, there is no need to intentionally aggravate or hide. This way the patient can get help when he or she has an attack. This is especially true when the condition is not fully controlled. It can help others to better understand the patient and the epilepsy; it can also bring the patient closer to people with whom he or she has an important relationship; and it can reduce the patient’s anxiety about seizures and dispel absurd claims and misconceptions about epilepsy.
The importance of communication between patients and physicians
The physician should encourage the patient to become a treatment collaborator so that the patient will actively cooperate in treatment. Sometimes physicians overlook information and necessary support that patients need, such as information about medications and regimens, treatment options available to patients, and alternate options. Patients should actively ask their doctors if they feel they are not being told what they want to know. If the patient cannot understand the doctor’s answer, he or she should let the doctor explain until he or she is clear, which is very important for active cooperation with treatment. Patients can also get more information from medication instructions, epilepsy-related books, popular science books, the library and the Internet.
What help should the patient get from the doctor?
(1) The doctor should answer questions from the patient and give as much information about the condition as possible.
(2) Develop multiple treatment plans that the patient can choose from.
(3) Help the patient choose a career that is right for him or her.
(4) The physician’s ability is limited, so the patient should be honest about the limited nature of treatment.
(5) How should patients with epilepsy deal with their condition?
Although there has been great progress in the diagnosis of epilepsy, due to the characteristics of our country, most epilepsy patients come from rural areas and there are relatively few epilepsy specialists, thus causing a long delay from the onset of the disease to a definitive diagnosis, as well as making it difficult to obtain relevant information about epilepsy. The reason for this phenomenon is that patients are not able to go to epilepsy specialists in time, and on the other hand, the prejudice and indifference of the society towards epilepsy patients makes a considerable number of patients and their families unable to face the facts. In order to get better treatment for epilepsy patients, every epilepsy patient should do the following.
(1) Actively consult an epilepsy specialist or epilepsy expert.
(2) Actively undergo relevant special tests that can help clarify the diagnosis, such as EEG, cranial MRI scan, etc.
(3) Standardized treatment should be actively carried out after a clear diagnosis. If conditions allow, try to go to a regular medical institution that specializes in epilepsy with epileptologists and specialized examination equipment.
(4) Have information about your condition and the impact of epilepsy on your work and daily life.
(5) Women of childbearing age with epilepsy should undergo preconception counseling.
(6) Parents of children with epilepsy should have information about epilepsy in children.
(6) Patients with epilepsy and their families should record seizures
Detailed documentation of seizures is a helpful and simple method for both the patient and the physician, and is crucial to clarifying the diagnosis, grasping the progress of the disease, and observing the effects of drug therapy. The record should include the date and time of each seizure, the clinical presentation, duration, severity, and any other circumstances encountered, as well as a video recording of the seizure, if available.