I used to have a real block against connecting with people that had Epilepsy especially on forums which seemed to be the only method of connection. I didn’t want to be associated with it at all and certainly didn’t want to talk with anyone that had it for some reason. Twenty five years ago when I was diagnosed and to this day as well, there were/are no real time support groups in the city where I live that run on a weekly basis so that people can have a face to face chinwag about the fun, the freaky and the frightening in relation to their Epilepsy condition. There is a foundation and friendly people there but when I asked about groups that get together, the answer was “we don’t really do that, there is the forum for that” I find this very odd and am planning to do something about this soon.
When I did get over my judgements briefly and try to get on a forum, all I was reading and seeing were conversations about bad seizures and lots of medication, side effects, relying on doctors solely and victim stuff. This made me shy away from the forums in a real hurry and as I made the connection that people on the forums with Epilepsy, are people that are sick. I didn’t want to associate with that label so I let the whole concept go.
In all honesty though, when I was 19 and newly diagnosed, any connection would have been a negative one. What I didn’t factor in was that amongst the negatives of associating with people that had Epilepsy, there would also have been the positives of associating with people that had Epilepsy. I have compiled a list of positives and negatives as I have seen it over the past 25 years relating to making connections.
Negatives:
- Some people are happy to be labelled as an Epileptic and have Epilepsy rule their daily existence which looked through my lenses like playing the victim role and I didn’t have time for this mindset
- There is way too much emphasis on doctor’s and pharmaceutical treatment being the only way and people can get defensive when you question what their comfort zone is based on.
- The forums were the only way people could connect (as I have gotten older and the interweb has made connecting easier I can now see the benefit of the forums to bring people together from different countries).
- If I reached out to people then they would know I had Epilepsy and I was doing a damn fine job of hiding it
Positives:
- You don’t have to explain what Epilepsy is to someone that has it and that is liberating, no talk of what to do, how to do it, what happens after, before etc.
- When there is talk of aura’s, strange smells, sights, sounds before a seizure you are totally aware of what they are talking about and can relate in a very empathetic way
- There is a camaraderie of awareness around conversations to do with coping strategies around having seizures, almost like listening in to a foreign language if you weren’t familiar with the jargon.
- You can share your “wins” with people that are rooting for you even if they don’t know you personally. They know the mighty E and how debilitating it can be.
These days I am, much more advanced in my acceptance of having Epilepsy and I am on the web trying my best to find people who have the same approach to my way of managing my seizures. Nowadays, I feel like I have something to offer of merit and worth to other people living real time with Epilepsy.
There is so much on Epilepsy now on the Internet. So many places for people to be part of a tribe, to have their say, to share their triumphs and to encourage others with their stories. It’s very exciting.
If you’re interested in seeing my way of thinking about things to do with Epilepsy you can always like my FB page – Electro Girl
Stay true to yourselves and safe
Lainie
Note: This article was originally published on Living Well With Epilepsy, June 8, 2016 as part of the Epilepsy Blog Relay™.
