Seize this job opportunity

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There’s nothing like going through something traumatic to make you want to seize the day…to say this is the day I’m going to start living life to the fullest and start making a difference. You feel motivated and empowered.  You feel confident, like you can take on the world and win.

Now what if the traumatic experience hasn’t ended? What if live in fear each day because you’re worried that you will either have a seizure or someone will find out you have epilepsy and never look at you in the same way again.   

Now imagine what it could be like if people understood your epilepsy and you didn’t have to feel that fear again. What if you seized the opportunity to make a difference? What if you chose to take part in the second of a series of posts about recognizing something wrong (lack of epilepsy awareness) and helped to make it right?

Problem 1 - lack of epilepsy awareness
There is a stigma associated with epilepsy because people fear what they don’t understand. That fear is even greater when it involves the brain, especially if the brain doesn’t work correctly and causes the body to do things it wouldn’t normally do. Yes, it can look weird…even to other people who have epilepsy, because not all seizures are the same. Sixty percent of seizures only affect one half of the brain (focal seizures) so the symptoms of a seizure are different than those that affect both halves of the brain (generalized seizures). 

To get a sense of what it can feel like to have epilepsy, imagine the following: 

• Not being able to communicate because either you don’t understand what people are saying or you are unable to find the words you need to communicate. Even if you find the words, they either don’t make it from your mind to your mouth or it takes a supreme effort to say them and it may mean only being able to say a few words at a time. For example, “I…was trying…to get to the…um, um… (looking for the word cafeteria) place…for food.”
• Mumbling, slurring your speech, or being unable to walk a straight line. You can appear to be drunk when you haven’t even had one drink.
• Feeling, hearing, and seeing things that aren’t there, which can be characteristics of some seizures.
• Falling to the floor/ground and having a seizure...the kind where the muscles in your body spasm, you shake, your eyes roll, you bite your tongue and you may even pee your pants.
• Being accused of not paying attention because you stare into space. You miss pieces of conversation, have trouble participating in meetings at work, or have trouble learning in school because you miss too much information.
• Doing things that you aren’t even aware you’re doing. For example, picking at your clothes, smacking your lips, or blinking your eyes rapidly.
• Having an arm or leg suddenly jerk like it has a mind of its own.
• Feeling like a burden if you can’t live on your own, drive, or even have a bath (for fear of drowning).
• Being treated like you are less intelligent than you really are.
• Being discriminated against when trying to find a job.
• Not telling people that you have epilepsy because you’re afraid of what their reaction will be. 

Problem 2 - fear of discovery
Problem 1 and 2 create a vicious cycle. If you don’t talk about epilepsy because you’re afraid, how can people become more aware of epilepsy? If people don’t learn about epilepsy and the impact it has on your life, how can they become more supportive and want to help? 

Breaking the cycle of ignorance and fear could be the factor that ultimately improves the quality of your life. You may be able to develop relationships with people that you never knew you could have. A bonus would be if the increase in awareness resulted in more donations. With more funding, more research could be done. What if everyone with epilepsy made this one small change (conquer fear to increase awareness) and it could result in the discovery of new medications that could help you or someone else to control seizures that could never be controlled before?

More common than you think
Epilepsy is a brain disorder that is diagnosed based on the following:

• Number of seizures (at least two or more)
• Descriptions of the seizures (maybe even a video)
• Medical and family history
• Diagnostic tests that indicate seizures are likely to occur in the future. 

There are approximately 65 million people in the world who have epilepsy and between 50 to 70 percent of the time the cause isn’t known. In the United States, there are about 150,000 people who are diagnosed with epilepsy each year. About 1 in 26 people will be diagnosed with epilepsy in their lifetime. In Canada about 42 people are diagnosed with epilepsy each day and of those people who have epilepsy, two out of three will have ‘good’ seizure control. 

In the United Kingdom (UK) there are currently 600,000 people living with epilepsy. Of those people, only 52% are seizure free. Being seizure free is much different than having ‘good’ seizure control. This difference could be part of the reason why there is a difference in numbers between countries.

If you are surprised by these numbers, keep in mind that the numbers may be much higher. Not everyone who has seizures will seek medical assistance because of stigma and fear.   

What you can do​

• Tell at least one person you’re with that you have epilepsy and what to do if you have a seizure.
• Refuse to allow people to treat you differently because of your epilepsy. Educate them and, if they still treat you differently, decide if you still want them to be part of your life.
• Fight discrimination. Know your legal rights. If you are asked if you have any medical conditions either as part of the paperwork to apply for a job or asked during an interview, you may not want to work for that company. It’s a form of discrimination. If you feel like you’ve been discriminated against either before or after you’ve been hired, seek legal advice. Check online, there may be lawyers who will help you without charging you a fee (pro bono).  
• See a seizure as an opportunity to educate others about epilepsy. If you’ve kept your epilepsy a secret, it’s no longer a secret after you’ve had a seizure. By not telling someone about your seizures ahead of time, you may not have the support and care you need during and after a seizure. Talking about your epilepsy is the key to creating more awareness.
• Help to raise funds for research. If there is an epilepsy walk, get sponsors and participate. Be part of the solution.
• See your doctor if you have any kind of seizure. Remember, a seizure does not have to involve losing consciousness and having a convulsion on the floor.Believe in yourself. You may be able to do much more than you think. You are a person first who just happens to have epilepsy.

It's your job to break the cycle of ignorance and fear. Seize the opportunity to make your life and the lives of others much better.