Telling Someone | Navigating Existing Relationships | Get Support
Dating and relationships while living with epilepsy can be challenging. When and how should you talk about your condition? How will your epilepsy impact getting to know someone new? How may epilepsy and epileptic medications affect intimacy? These are all unique considerations for someone living with epilepsy.
Epilepsy affects over 3.4 million people — nearly 1 percent — of the U.S. population and 65 million people around the world. It’s one of the most common brain conditions, affecting more people than autism, multiple sclerosis, Parkinson’s disease, and cerebral palsy combined. Talking about it openly with your family members and romantic partners is important. It can help them to better understand your life with epilepsy and your safety needs in medical situations.
“I am very thankful for my husband. He is a great caretaker,” shared one MyEpilepsyTeam member. “We found that to make our relationship work, we had to look at my epilepsy as a team effort.”
Different aspects of living with epilepsy may make romantic relationships challenging, but it’s important to remember that relationships can be challenging for anyone. Dating and meeting new people may bring on complex feelings like anxiety, nervousness, and fear.
You may be nervous about telling someone new that you have epilepsy, fear their reaction, or worry about having a seizure in a new person’s presence. You may also have concerns about other factors related to dating with epilepsy, such as not being able to drive or the impacts that epileptic medications may have on your relationship.
There are several tips to keep in mind when dating and telling new people about your epilepsy.
When telling a new person and potential partner about your epilepsy, be clear and confident. They will pick up on your attitude about your condition by how you talk about it. Being straightforward and positive about your condition will help someone new to better understand you, more than if you are hesitant or fearful about the information you share with them.
“If they care about you, they will listen. They will understand. If it scares them off, well you probably don’t want to be with them in the first place,” said one MyEpilepsyTeam member. “I would mention it casually when the time is right.”
The best time to tell a new person about your epilepsy is when you feel comfortable doing so. It’s personal information that you are not obligated to share with everyone. However, if your epilepsy is severe, it would be smart to share that information sooner rather than later.
If you’re at risk of having a seizure while spending time with someone new, you may want to share seizure first aid with them. Providing this information to someone you’re dating might help them to feel more comfortable being around you — and prepared to help in case you have a seizure.
“Having seizures and being in a relationship can be stressful, but it doesn’t have to be. Tell your significant other about your seizure condition, explain what your seizures are, and explain what to do in case one happens,” shared a MyEpilepsyTeam member. “It is always better to be upfront so that it isn’t so much of a shock to them.”
When you first tell someone that you have epilepsy, they may have a lot of questions. Consider bringing educational materials about epilepsy with you to the conversation, such as online resources or fact sheets from trusted medical resources.
Many people have either heard of or know someone who has epilepsy. For people who are not familiar with the condition, having educational resources about epilepsy may help them feel better informed, less concerned, and more at ease during your conversation.
It may be difficult to start a conversation about your epilepsy. Here are some scripts inspired by the Epilepsy Foundation for starting this conversation with someone new:
Finally, when telling someone that you’re dating about your epilepsy, give them space to process the information. Be patient with them. They may have many questions and concerns, which is another reason why it is important to wait to disclose your epilepsy until you are comfortable doing so.
You may even encourage your date to ask you questions. Talking through their questions and concerns will help you to learn more about each other’s communication styles. Whether it be about epilepsy or other topics, having tough conversations is a major component of a new relationship, as well as deciding if you want to spend more time getting to know that person.
Living with epilepsy may bring up unique challenges for a romantic relationship, including the ups and downs of dealing with epilepsy symptoms and seizures, the emotional and physical aftermath of seizures, and the side effects of epilepsy medications. There are several important considerations for navigating a relationship with epilepsy. Addressing concerns openly and honestly with a partner will only work to strengthen the relationship.
Life with epilepsy may involve more symptoms than just seizures. People with epilepsy are more likely to have physical comorbidities and mental health disorders like depression and anxiety. Explain your epilepsy, your specific symptoms, and your typical seizures to your partner. You might also want to share your history and diagnosis story, as well as common seizure triggers (if you have them). Sharing your epilepsy story helps your partner to be more aware and understanding of your condition, and talking about your experiences may also be therapeutic for you.
If you are in a relationship with someone, they should be open to helping and caring for you and receptive to learning about your medical conditions. Educate your partner about seizure first aid practices. Being prepared to respond to seizures will help your partner to feel more comfortable and will decrease your chances of getting hurt during an episode. Knowing that your partner is dependable will also improve your quality of life and enhance your relationship.
Once you are in a relationship with someone, it is important to continue having ongoing, open, and honest conversations about your epilepsy. Communication is key to any relationship. Keep your channels of communication open, especially after seizures, since they may bring up difficult emotions and concerns for each of you.
As with any health condition, over time your symptoms, medications, doctors, and health care situation may change. Talking through these changes with your partner will help you to be on the same page about your epilepsy treatment.
Concerns about intimacy and sex are common among people living with epilepsy. According to the Epilepsy Society, over half of men and one-third of women living with epilepsy say that they have problems with sex. Some people worry that they will have a seizure during sex. Others report issues like sexual dysfunction and a low sex drive.
One MyEpilepsyTeam member asked, “Do any men find they have a reduced sex drive because of the medication they are on affecting their relationship with their long-term partner?” Another member answered, “I lost my sex drive many years ago, having been on so many medications.”
Talk to your general practitioner or a trusted clinician if you have any concerns about sexual problems caused by epilepsy or medications. Some problems are potentially treatable, and your doctor can help you get answers and connect you with additional resources.
Some epilepsy medications may interact with birth control methods and make them less effective. Enzyme-inducing antiepileptic drugs may affect contraceptive methods that contain hormones, such as the birth control pill.
If you are in a sexual relationship, talk to your doctor or neurologist to select the best combination of epilepsy medications and contraception for you. And if you become pregnant or plan to become pregnant, talk to your doctor about how epilepsy and medications may affect a pregnancy.
When approaching dating and relationships while living with epilepsy, joining a support group and talking about your experiences may be helpful. Talking with other people who understand what you’re going through can be a great resource for when you have questions and need encouragement.
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 98,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.
How does your epilepsy affect dating and romantic relationships? Share your experience in the comments below, or start a conversation by posting on your Activities page.