Home » Epilepsy Blog » Epilepsy Blog Relay » Jun 22 EBR Posts » Epilepsy Blog Relay: I’m tired of fighting within the epilepsy community

Epilepsy Blog Relay: I’m tired of fighting within the epilepsy community

Tired of fighting in the epilepsy community

I thought about making the title of this post, “Many hands make light work” but that just felt too positive because frankly I’m tired of the fighting among members of the epilepsy community. The fact that the epilepsy community is so fractured is only hindering all our work. Today I was informed that by sharing livingwellwithepilepsy.com stories on the SubReddit page for epilepsy, I had “offended” the two owners of the page.

In years past, the leaders of this subreddit had not even bothered to allow me to post, just simply blocked me from participating at all. I’m not certain if I was seen as a threat or what. I honestly don’t care at this point. They are just an example of the larger issue. This is not the first time I have been blocked, hindered, sidelined etc. possibly for fear I take someone else’s glory or reap too many benefits. Which by the way, is not why Living Well With Epilepsy was created at all.

For the record

For the record, in this scenario, I attempted to gain wider visibility for the stories that were submitted as part of the epilepsy blog relay. Bear in mind that most of these stories are from readers like you. Just everyday folks who are doing their best to manage their epilepsy. Each of these stories are edited by me (not a team of people, just me a person with epilepsy, and sometimes help from one other talented writer with epilepsy). This is not a mega machine. It is one woman trying her best to make a difference.

Epilepsy has enough problems

Honestly, if you look at the results from the story on Epilepsy Stigma, and the story on SUDEP Statistics, we have enough problems without causing issues for one another. And if you take a look at my story on what a cancer diagnosis taught me about living with epilepsy, you will get even more clarity on the fact that I am only trying to amplify voices and make a difference.

Lost patience

I have lost patience with the infighting and you should too. Until we all get fed up with this way of working, nothing is going to change. People with epilepsy will continue to be isolated and sidelined, and limited change will happen. Its time to work together.

 

I’d love to hear your thoughts.

 

 

 

  1. Soo Ihm
    | Reply

    I totally agree with you, Jessica! I’ve seen bad relationships between organizations ruin a possible collaboration. It’s too bad that people take things personally and can’t get work together.

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