Yesterday was Valentine’s Day, a day which is celebrated annually on February 14th where people typically show affection to their loved one by sending cards and gifts with messages of love. Notably for the epilepsy community, not only was St. Valentine the patron saint of love but also the patron saint of epilepsy.
For Valentine’s Day this year, one of our Epilepsy Positivity volunteers (Sagel Panday, Instagram: @epilepsy_awareness15) wanted to gather the experiences of people with epilepsy and the partners of people with epilepsy to help to raise awareness of realities of relationships for those affected by epilepsy.
Some members within the online epilepsy community shared some difficult experiences of being in relationships with epilepsy. These included challenges surrounding stigma, lack of education, the unpredictability of the condition, fear and feeling the strain of supporting each other.
However, many people with epilepsy also have fulfilling relationships with a partner.
Here is the video which Sagel put together in celebration of epilepsy and love:
Further, several Instagram users also shared many uplifting experiences, as well as advice for navigating relationships when you have epilepsy. Here are a few of the messages:
Sharing you have epilepsy:
“I now tell right away. Tell them how to handle, what to expect, everything. The good ones stick around. I am 51 now, and don’t have time for games. I can’t work or drive, on permanent disability. I feel they have a right to know why. I don’t want them scared or unprepared if I have one. If they handle it, why waste each other's time?”
The process of finding the right person who will respect you:
“After 26 years of having epilepsy, I finally feel like I’m in a relationship where it doesn’t matter. He obviously cares and wants everything to be fine. But he doesn’t see it as something’s ‘wrong’ with me.”
Educating your partner:
“I have epilepsy and a husband who had NO idea what it was or anything before me. Now he’s a pro!”
Having a supportive partner, especially through difficult times:
“I’ve been having seizures for almost 5 years and have been in a loving relationship for 3 years! He’s so insanely supportive! Don’t settle for anything less than someone who loves and supports you no matter what!”
“10 months ago yesterday, I found the most amazing, caring, loving, understanding, adorable, smart and overall amazing man I get to call my boyfriend.”
“I’ve been married for going on 17 years. We’ve been through a lot together but through it all he’s supportive and by my side. I couldn’t ask for anyone better and I feel very fortunate.”
“I have the most beautiful and caring wife to support me which is hard work at times.”
“I’ve been with my boyfriend nearly 3 years. We met at university and I told him pretty much straight away, just in case anything happened! He was understanding and positive which straight away made me comfortable talking about everything. He is the most understanding and encouraging person in my life. I would not have been able to achieve what I have today without him by my side. The final year of university was hard for me but he didn’t let me give up. I got my degree at Christmas and I know with him and my friends and family that I can achieve anything I put my mind to in the future.”
“My boyfriend is absolutely amazing, we’ve been together for 3 years and though I’m newly diagnosed with epilepsy he’s stuck by my side and been my biggest supporter over the last few weeks, he cheers me up when I feel like it’s taking over and I just know I couldn’t cope without him.”
“I have epilepsy and I am currently engaged. We are getting married in the summer of 2020 and are trying to plan a family after that! Better start planning now...for both. I’m almost 4 years seizure free, but I’m well aware of how much preparation needs to go into having a baby when you have epilepsy.”
...And helping you to view the situation in a more positive light:
Diagnosed at 15, now 22. I have been with my boyfriend for 4 years now, he has stood by my side during the worst point in my life and Now I am days away from being 1 year seizure free, He is my biggest supporter. I can not express how amazing it is to find someone who will love you unconditionally, drive you to every medical appointment, and hold you after seizures. Words do not describe how phenomenal he has been with my condition, he has made me look at myself as warrior, instead of a victim.”
We also gained some wonderful perspectives from individuals in relationships with people with epilepsy:
"My husband and I met online 5 years ago. Before we decided to meet in person, he told me he wasn’t able to drive due to his seizures. I didn’t care. All I cared about was the man I met. Before we started dating, he had already had one brain surgery. After we got engaged, he had another. He has now been seizure free for almost 3 years and we’re expecting our first child in July! I fell in love with the man I met, regardless of his seizures. It’s been a hell of a journey, but I’m so happy and proud to be his wife.”
“It doesn’t change that I love her so much. I love her personality, she is the most beautiful woman in the world that I have ever set my eyes on. And when she falls sick of her seizures I just want to love her more, care for her even more so that she can spring back up better and stronger. I’m understanding her more everyday and want to do for the rest of our lives together.”
“I had never seen a seizure until I met my boyfriend. He has refractory epilepsy, and I don’t think of it as his battles but ours. If he does keto, so do I - I am at every appointment and I know every epilepsy med out there. We are in this together.”
We had so many brilliant and uplifting responses, we could only share a few on here. To read more experiences within the topic of ‘Epilepsy and Relationships, see the full Instagram post here: https://www.instagram.com/p/BteLIDtF8gO/
Thank you to everyone who shared their experiences - it is really appreciated.
Whether you chose to celebrate Valentine’s Day or not, we hope you had a wonderful February 14th and find the love that you both want and deserve.
- Epilepsy Positivity