It is normal to have a few questions about your social life when first getting diagnosed with epilepsy. For some people this may be difficult due to fear of safety, judgment, rejection, or stigma. We get it. Below, confronts some common concerns and how to navigate misinformation. Click for concerns about family life and school.
Always contact your healthcare provider about what situations are safe for you regarding your social life and activities.
There are several benefits to maintaining a social life which include positive mental health, emotion regulation, security and stress reduction. The benefits of maintaining relationships are important to quality life. But, with epilepsy, concerns for safety and fear of judgement may make this difficult for some depending on symptoms and severity. Living with epilepsy doesn't come without its bumps in the road. Things can go great for a while and then after a while something may happen. For instance, you make have had a seizure for the first time in a while, or you keep having them. The way you dealt with problems in the past might not be working as well now. It may be time to reach out and learn something new. You may need a new way of looking at life with epilepsy, a new way of coping, or a new way of getting help.
A great way to get involved is to keep up with our social events and support regarding the epilepsy community by using the contact information below. Follow us on Facebook and Instagram if you aren't already!
Stigma can put a damper on a lot of life experiences for those with epilepsy whether that be out in town, at school or work. Stigma can mentally affect others in serious ways, spoken or unspoken. This is because stigma can validate those initial fears of getting involved socially and can make trying new experiences or continuing a normal life before a diagnosis, seem less desirable. One of the best ways we can battle stigma is to educate others about epilepsy and creating a society that accepts, empowers and strengthens.
Here are a few myths commonly associated with stigma, replaced by facts:
1. Myth: Epilepsy is contagious.
Fact: Epilepsy is not a bacteria or a virus. Though illness and infection complications can cause seizure risks, viruses and bacteria do not carry epilepsy in and of itself.
2. Myth: Seizures always have convulsions.
Fact: Signs of a seizure can include blankly staring, eye movements, chewing motions, etc. For a full list on how to identify a seizure, click here.
3. Myth: Seizures can cause someone to swallow their tongue or bite it, so you need to put something in their mouth for prevention.
Fact: It is physically impossible to swallow your tongue while having a seizure. Though, the person may bite their tongue, it is important NOT to put anything in their mouth. This can cause them to choke or prevent them from breathing properly. Given the two choices, it is better for someone to bite their tongue than to choke.
4. Myth: People with epilepsy can't drive.
Fact: Each state has specific guidelines about the time a person must be seizure free before they are allowed to drive.
5. Myth: A seizure can be stopped by restraining them.
Fact: Restraining a person does not stop the person from having a seizure. Never restrain someone because it can cause injury. Simply make sure that sharp and potentially harmful objects are away from them.
6. Myth: Epilepsy is a mental illness.
Fact: Epilepsy is a physical condition. Average seizures do not have a permanent or lasting effect on the brain. Seizures do not change a person's intelligence, ability or alertness.
7. Myth: Every seizure is a critical medical emergency. You have to call an ambulance for every seizure.
Fact: Unless a person's seizure is not lasting longer than 5 minutes or clustering, it is seldom necessary to call an ambulance unless the person is unresponsive, is non cognitive, injured, or has severe memory issues like not remembering their name. Ask the person if they have rescue medication.
8. Myth: A person who has seizures are a liability and not reliable enough to hire.
Fact: A person who has epilepsy can work in an environment deemed safe by their healthcare provider. Those that have epilepsy are likely okay to talk about what to expect when they have a seizure and how to respond. People with epilepsy are often aware of their employers’ concerns, and are keen to prove themselves to be productive, reliable and valuable employees.
9, Myth: People with epilepsy will never have their seizures under control.
Fact: Approximately 44% of adults with epilepsy can get seizures controlled with medicine. Although, there is still much to do for the other 56%.
10. Myth: Seizures are uncommon and scary to see.
Fact: Seizures are in fact more common than you might think. 1 in 100 people have an unprovoked seizure in their lifetime. Perhaps you know someone with epilepsy and don't know it. On the other hand, to someone unfamiliar, a person can panic when they see someone having a seizure because they don't know what to do. The best way to conquer the fear of you or a loved one having a seizure is to be informed on first-aid, and watch videos to know what to expect.
11. Myth: People with epilepsy are not as intelligent or as physically capable as the average person.
Fact: Epilepsy does not impact physical or mental ability. Those with epilepsy are just as intelligent and capable as the next person.