One of the biggest changes I have made in my approach to dealing with my epilepsy is not expecting sympathy or understanding from others. This sounds like a very harsh thing to do, but, from my experiences I have learned that I have received less sympathy and understanding from others then I have expected which has just set me up for a great amount of disappointment; making the experiences way harder to deal with. Honestly, when I have a seizure I sometimes expect negative judgements and discrimination depending on where I have it. When reading this you are going to think this sounds very pessimistic and harsh. However, I will explain how my experiences have taught me to look inside for the strength rather than to look for it through the unstable outside sources and why this has benefited me.
I started having my seizures in junior high during my sleep. They were noticed when I was having sleepovers with friends. When my friends told my parents it was just thought of as that I am probably moving around a lot in my sleep. It was confirmed that I was having seizures in high-school. My school was having a thirty hour famine over night to raised money. At the time, I recalled what happening as being horrific and the worst night of my life. Everyone was in line to get their first serving of food as the thirty hour famine was coming to an end. In front of what I perceived to be my entire high school, I fell on the floor and had a Grand Mal seizure.
At that age I cared so much about what my peers thought that I felt so substantially embarrassed and judged. I feel like for a while it turned me from being a confident and upbeat person to someone who is bitter, self-conscious and afraid. I felt like everyone was talking about what happened. Now I see this as being foolish, but at that age it is common for people to feel as though the world revolves around them.
You may ask; how does this relate to ‘accept sympathy, don’t expect it’. Let me further explain. After having the seizure I expected everyone to feel bad for me and treat me with a great amount of kindness. The majority of my friends at the time gave me a bare minimal amount of sympathy, understanding or even acceptance. I felt like I turned into the outcast of the group. At that age everyone aims at being the same as each other. The people who are different aren’t accepted very well. I was now different. At that age, people tend to be focussed primarily on their own desires. Being a friend with me came with the baggage of my epilepsy which wasn’t the most attractive.
Most of my emotional discomfort of the time came from a lack of support and sympathy from my friends. At the time, this was more upsetting than actually having epilepsy. I feel like I was constantly hoping for their sympathy and support which led me to constant disappointment and hurt. Instead, I should have been looking inside for strength. I should have been accepting sympathy from people like my parents who constantly were willing to give it to me. Instead, I was turning others sympathy away.
It took me until grade twelve, I would say, to learn to not expect sympathy from those who cannot give it. Rather, I made quite a few more friends and was able to accept their sympathy and support. This made me so much stronger. It has led me in a path to have a very strong and supportive network of people. This is not a requirement of relationships, rather it is simply something that helps strengthen my relationships.
Do not expect that every person you tell that you have epilepsy will feel bad for you or treat you better. It is very common for others to not understand. They may not even know what to be sympathetic towards. It is possible that they will even treat you worse. By knowing this, you will not be as shocked and hurt every time it happens. I know this because of the tremendous amount of times that I was treated worse because of my epilepsy. Over time, I have changed my expectations. This does not necessarily mean I accept being treated wrongly and don’t do anything about it.
When I get support from others, I take it with open arms and it builds an extra tight bond with them.I find that my epilepsy has given a lot of my relationships so much more purpose, strength and meaning. I learned to not seek support in my less supportive relationships but still to enjoy them as a person and what they have to offer me. Those who are unsympathetic are not necessarily bad people and still have something they can offer to you. When I don’t get support from others, I do not view it as their intention to be rude or insensitive, I view it as their inability to relate or understand.
The support I receive now from my partner, family and friends is more than I could have ever expected. I am such a lucky girl who happens to have epilepsy.