When I was growing up, I was an extremely sociable person. Any chance I had to meet new people, go out to new places, and go to parties with my friends, I took! I wanted to try and do everything, but a lot of things were off-limits for me. Even trivial situations like sleepovers were problematic as talking and staying up all night with my friends could lead to a seizure.
Like many young people with epilepsy, I struggled with my social life growing up as I felt an injustice was being done to me, and therefore, my life was unbearable and unfair in comparison to my free-spirited friends.
As I have grown older and more aware of my epilepsy triggers, I have calmed down and have become more comfortable with staying in. I slowly learnt how to have fun at home and in my own space. However, this behaviour sometimes led me not wanting to go out at all, which was unhealthy and harmful for my mental state and my friendships. I have experienced opposite ends of the stick where I have been a bit of a nomad and too much of a home dweller. Due to this imbalance, these situations have led to seizures, and have caused my friends to worry about me as I became a bit of a nightmare to go out with. Especially as growing up, my seizures were uncontrolled and I did not put my health first. I always felt like the baby of the group as I always needed looking after in some way. Therefore, it has taken me a while to find a happy medium as having a social life with epilepsy can ultimately be tricky.
So, here are some tips that will hopefully help you, your epilepsy, and your social life:
- Be open and honest with your friends about your epilepsy and how it affects you. It is good to inform your friends anyway of your epilepsy just in case the worst happens. On the other hand, opening up about your epilepsy will help your friends get to know the real you and understand you as a person more. You will find that your friends will want to reciprocate these feelings of being open with you as well. Even though opening up can seem daunting, especially as epilepsy can seem so personal and sometimes hard to describe, it is okay to be vulnerable in front of your friends. So if you have not already done this, rip that plaster off because it will be for the better!
- Remember to be patient with your friends also. Friendship is a two-way street, and epilepsy can be very confusing to understand to some. So give your friends time and it will benefit your friendships in the long run.
- It is okay to say no! Do not feel like you have to attend every social situation. Put your health first, and tell your friends why you are saying no too. They will learn to understand why and understand more about your epilepsy. Saying no is not always easy, but your confidence will grow the more you listen to what your body wants and needs.
- If your friends do not want to understand you and your life with epilepsy, they are not your friends. Similar to how we deal with listening to our friends’ love life, their mental health problems, and so on, they have to understand and accept that with you comes with your difficulties with epilepsy. Sharing and listening do bring friends closer, and if you feel like a ‘friend’ does not have the time of day to listen to you, stand up to them, and see the outcome. If the result ends in the loss of a friend, this can be tough. However, it will be better for your overall happiness and your epilepsy.
- If you are like me and can sometimes be considered to be the ‘baby’ of the group, that’s okay. It used to annoy me as I wanted to seem like this strong, independent, unstoppable force in front of my friends. So, try and see this term ‘baby’ (or whatever relates more to you) in a positive light, as it means your friends love and care about you. Like how you want to naturally help your friends, they also want to help pick you up when you are down (both physically and literally!), so you can be the strong person that you are. Just keep reminding yourself that is always okay to need and ask for help.
- Try and keep your social life simple for the sake of your epilepsy. For instance, do not get involved in any unnecessary drama. Try and take control of your social life so you have less stress, which will ultimately help keep your seizures under control.
- It’s okay to leave a social situation early if you are not feeling yourself! If you do not feel yourself and inside are becoming worried about having a seizure, go home. Do not worry about missing out, because there will be plenty of other opportunities to hang out with friends.
- If you are at drinking age, and you cannot drink and wish you could do not worry. It is hard to get used to, but the hangover and the seizures are not worth it. So only have one drink (if you are allowed to) or a soft drink of some sort. Over time, you will get used to being sober around your friends and it will become like second nature to you. If you would rather avoid the drinking scene altogether, there are many other ways to meet up with your friends. You can go shopping, go out for lunch, and if its sunny like now, go to the park, just to list a few. Seeing your friends does not mean you have to go out out!
