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You’re back to work after being newly diagnosed with epilepsy, or maybe you have been newly employed at your job and don’t know if you should disclose your condition to your employers or colleagues or how to tell them. You are not alone. Studies  have shown that people with epilepsy generally do not like to disclose their condition to their employers, as they are not sure of the type of reactions they’ll receive.
Deciding to talk to your manager or coworkers about your epilepsy can be difficult, and it has its pros and cons, as do all decisions. Before you decide, we’d like to provide you with the positive and not-so-positive sides of informing your employer, along with some information on how to tell your colleagues about your condition, to help you make a better choice.
Deciding whether or not to disclose your condition to your employer will depend on how frequent your seizures are or if you have been seizure-free for some time. If you decide to tell them, some employers might perform an assessment, such as a Health and Safety Risk assessment (in the UK), or its equivalent in the USA and other countries, to determine how safe it is for you to work. Not to worry, many people still work despite having epilepsy, especially if their seizures are under control due to medication . You can read more about working with epilepsy in this blog post.
Down the line, it might become important to tell your employer, especially your manager about your condition. Before telling them, you might want to first consider telling the closest person to you at work (we have added some helpful information on how to do this later on in this post), so that you can have someone to support you in case your manager’s reaction is not what you expect. Like every situation where you need to share personal information, there are some benefits and drawbacks you should expect.
Dealing with epilepsy at work might mean that, apart from your employer, you also have to tell the people you work with. Telling your colleagues about your epilepsy can be easier than speaking with your employers, with the added benefit that they can give you the needed support if you eventually decide to tell your employers. Here are some useful tips to help you disclose your condition:
Sometimes, disclosing your condition may not go the way you want it to. It can be discouraging when the people you work with don’t know how to respond to knowing about your epilepsy. Many people with epilepsy complain about negative responses from their workplace when they open up about their epilepsy, and most of them do not disclose their epilepsy to their employers for this reason. Common reactions among employers to people with epilepsy disclosing their condition are:
Employers have the responsibility to adhere to many laws protecting people with epilepsy, and you should know these laws are designed to protect you from being treated differently because of your epilepsy. In the US, for example, you are covered by the Americans with Disabilities Act, to protect you against discrimination in the workplace. You can read about some of these rights in our previous blog post.
Despite some of the drawbacks, don’t be afraid to tell your employers about your epilepsy. The way you communicate it to them might make a huge difference in how they respond to the information. You should also let them know specifics like if you can drive or not or if you need to avoid certain jobs or activities. Tell them if they’ll need to make some adjustments for you regarding your job, like longer breaks, if necessary. Explain to them how your condition might affect your performance or if it shouldn’t affect your performance at all.
If you decide not to tell your employer but want to keep your condition private instead, it is still important to inform someone close to you about it. It’s useful not only so that they can help you when you have a seizure, but so that they can provide additional information to your physician that your colleagues might not have recorded. In this case, having an Embrace watch can be invaluable since it can alert your caregivers in case of a possible seizure, even if they are not physically near you, and also log seizure information that you can share with your physician.
It can be hard to discuss your epilepsy in your workplace, whether to colleagues or to your employer, but you should know that confidence and honesty are necessary to be able to educate and assure them about your condition. Be comfortable with your epilepsy, and this will give you enough confidence to tell others.