Issues for people with epilepsy
Epilepsy is a condition that has the potential to cause a loss of consciousness, often without warning. The condition impacts much of a patient's life, including personal safety, memory, and views by others. Those who have active seizures live with the fact that they can have a seizure at any time. Those whose seizures are controlled by medication live with the underlying side effects and the need to remember to take the medication at the correct times.
Most people with epilepsy have normal cognition levels at most times. When not during or immediately proceeding a seizure, a person with epilepsy generally is physically and mentally capable of everything a non-disabled person can do.
But a seizure can be disruptive to the process of normal life. During the seizure, depending on the type, the patient may be totally or partially unconscious, and out of commission to perform normal activities. Following the seizure the patient may be confused and disoriented for a period of time. The patient may also require rest after the seizure.
Following a seizure, many people do not have memory of a period of time immediately before the seizure.
Depression is very common among people with epilepsy, with rates as high as 20% for those whose seizures are successfully controlled, and 60% for those with uncontrolled seizures. Suicide is ten times as likely for people with epilepsy than it is for others. Particularly, this pertains to those who have Temporal Lobe Epilepsy, or "TLE". Such depression arises for a combination of reasons; three of them being: 1) the brain, itself, as its "scar-tissues" may have lower tolerance than that of an 'average' or normal person; 2) psychological effects - from embarrassment and humiliation, to frustrations, as well as the lack of independent lifestyle; and 3) side-effects of medication(s) - as perhaps all anti-epileptic drugs ("AED's") take their own toll on the human brain, too.
Personal safety is a major concern for persons with epilepsy. When sudden loss of consciousness occurs without warning, the patient is at risk for personal injury and possibly causing injury to others through loss of control or awareness of one's own body.
Many activities of daily living can be dangerous for people with epilepsy, such as bathing, cooking, or walking up or down steps. These can be remedied by taking showers as opposed to tub baths, cooking with a microwave oven rather than an open flame, and living on a ground level.
Certain high-risk sports, such as swimming, scuba diving, or snorkeling are considered dangerous for people with epilepsy. But they pose a level of danger for all participants. They can be equally safe for people with epilepsy and others if carried out with proper safety precautions.
The operation of a motor vehicle can be hazardous for people with epilepsy due to the fact that the driver can lose consciousness behind the wheel, and therefore, control of the vehicle, putting themselves and the public at risk. For those whose seizures are successfully controlled, many of the medications have side effects that cause drowsiness, also impacting driving. Unfortunately, in many areas, there is little or no choice, as to how these people need to get around, just like the rest of us. At the same time, however, getting a ride from a friend commonly leads to the unsaid expectation, that now the person with epilepsy essentially 'owes' the driver some kind of favor, for driving them around.
Epilepsy can have tremendous social issues for patients. This tends to begin with the public's misconceptions about epilepsy, itself; as many people tend to believe that pills can control seizures, by simple means of professional diagnosis, followed by prescription. As little as 60% of the people with epilepsy actually obtain considerable control of their seizures. Of those who obtain control, not all of them are able to keep control, too. Medications have their side-effects, just as our human bodies continuously change in numerous ways. Aside from that, one person's definition of considerable control may be different from another person's. To some people, just that 50% reduction rate, in the number of seizures they have per month is "considerable control"; but to other people, that is still far too many seizures, to declare that control pertains at all. As a result, people with epilepsy tend to be questioned, and even doubted, when they declare that they cannot go to work - or school - today, because of seizure activity.
Social acceptance from others is a common challenge; being even greater amongst those who have epilepsy. Though persons with epilepsy are otherwise just like anyone else, there are stigmas associated with epilepsy that can affect one's acceptance among others.
Depression is common due to impaired social acceptance. Amongst other social issues to arise, a person with epilepsy may be subjected to the contradicting identity as to whether or not disability pertains; especially, in the eyes of other people. As epilepsy is not a 'visible' disability, which you see as soon as you look at the person with epilepsy, there are many ways in which a person with epilepsy is actually disabled. Such a contradicting identity tends to create a social issue.
Another social issue, which can also pertain to the depression issue, is that of time well spent. Of those who have epilepsy, many people spend considerable amounts of time talking about their epilepsy; not always by their own will. One of the first topics addressed, between a person with epilepsy and their friends and relatives, is that of their epilepsy, and how their seizures have been. Much like the absence of a lost limb, it will always pertain. As we do not ask a person how their absent limb is, we should not ask a person how their present epilepsy is. It is still there; it always will be. Instead, we should let the person with epilepsy address the issue, at their discretion, while otherwise letting them live that complete life, by talking about everything else, too.
Many people with epilepsy have trouble with employment due to safety performing job duties, loss of work time during and after seizures, and transportation to and from a place of employment. This is one instance, where the contradicting identities of ability and disability tend to collide, thereby causing problems for those with epilepsy. Disability rights laws, such as the Americans with Disabilities Act ("ADA"), and the Rehabilitation Act ("Section 504"), amongst other laws, tend to be yet unclear in regards to epilepsy.
People with intractable - uncontrolled - seizure activity have things the hardest; as many of the job opportunities that are available everyday, they cannot obtain. Without a driver's license, the cab-driver, pizza-delivery, and newspaper-route jobs are out of reach to them. To complicate things further, job seeking - in itself - is complicated by not having their own form of transportation. Instead, they must wait for a transit bus, or pay cab-fare; which may be time-consuming, or high-cost, or both.
Children with epilepsy
For children, a variety of issues exist that can affect one's childhood. Strange facial expressions and physical actions during a seizure, just one time, can be a tool of humiliation throughout their future childhood years. Uncontrollable seizures can then mean repetitious humiliations; especially if loss of bladder-control or bowel-movements result from the seizure. Just the drooling from the mouth can also have its effects.
Much like employment, parents and social networks (including peers) tend to also exclude people with epilepsy from certain events; children being no exception. Parents tend to overly-protect their child who has epilepsy; while also telling that same child not to let epilepsy interfere with their life.
Epilepsy can force a child to be left out of activities common for children to be involved in, such as sports.
Epilepsy can affect a child's education. The child may be forced to miss a lot of school due to seizures. The seizures can impair a child's ability to memorize learning materials.
- Epilepsy: Information for You and Those Who Care about You By Elaine Wyllie: page 122
- Epilepsy: Information for You and Those Who Care about You By Elaine Wyllie: page 124
- Epilepsy: Patient and Family Guide By Orrin Devinsky: pages 258
- Epilepsy: Patient and Family Guide By Orrin Devinsky: pages 257-58
- Epilepsy: The Ultimate Teen Guide By Kathlyn Gay, Sean McGarrahan: page 42
- Epilepsy: The Ultimate Teen Guide By Kathlyn Gay, Sean McGarrahan: page 44