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.
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.
Founder and CEO
Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.
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.
Wow, I’m shocked! I do agree there is a lot of infighting in the epilepsy community. But I was totally polite and sincere. I told you exactly what I thought about you and LWWE. Here is the letter I shared with you.
Jessica, you didn’t really offend me. You’re just not listening to me. I reached out to you and wanted to talk and you blew me off… I’m going to share a letter I wrote to all the mods about you and LWWE 4 years ago:
A week or so ago, the founder of Living Well with Epilepsy, Jessica Smith tried to post about her blog here. I shot her down because she hadn’t messaged the mods. Then I went to her site and was pleasantly surprised. It wasn’t your typical my life blogger page, it was professional and informative and she was amazing, all about helping with the cause, force to reckon with: Check out her Bio!
I posted “The top 5 epilepsy bloggers” and she is on that list to introduce her to the group.
I have added LWWE to our resource sidebar and suggest she add a link to us on her page.
Will keep you posted as things develop. She might be mod material if she had more Reddit experience… She’s been on Reddit for only a week!
That letter was from 4 years ago I showed it to you on June 15, 2022. That same day I sent you this note.
Believe it or not, I am on your side and have been for a long time. Then we had a convo about big pharma being sponsors and everything fell apart (in 2018). I see two problems: you’re not using Reddit except to chat with us… Someone on your staff must see the benefit of the platform and assign them to work with us. And you may think we are in competition, but we are not. We are an altruistic peer support group that is open 24 /7 365. I know you guys are much more than an epilepsy blog site. I can’t put my finger on where you are going. But I am curious and want to see what develops with LWWE.
Since you don’t Reddit send someone to me that does so we can build a partnership.
All the best,
As a final thought, I don’t think we have treated you unfairly. Once you explained you posted and don’t read your mail on Reddit it all made sense. You weren’t ignoring us. We figured you just aren’t familiar with our rules.
We are a place for PWE and their families to share and support each other. I posted a spotlight article “Epilepsy By the Numbers” that was written by LWWE 4 days ago. It’s had 720 views as of this morning. We love everyone who is out there raising epilepsy awareness. We are selective and get too many requests to post on our site. If you want to work together you know where we are and how to reach us. I have extended the olive branch a few times and will do so again.
The r/epilepsy Mods
Hi Jessica and The r/epilepsy Mods! I’m fairly new to the epilepsy scene (just started having seizures about a year ago now) and am super stoked to have found your blog. I’m also an ADHD-er and have had some similar experiences with the ADHD community on Reddit (just in terms of ‘x’ party being offended by ‘y’ narrative, even though ultimately both parties mean well). Because of that though, I’ve been a bit timid to dive into any Epilepsy community online, but am suppper interested in what you said and would love to know a little bit more about how/ why/ what the infighting and beef within the epilepsy community is all about? (I don’t want to assume, but is it mostly just surrounding different ideas of how to narratively approach talking about living with epilepsy, or more that maybe there are a lot of like “lifestyle” epilepsy bloggers?)
Anyway, it seems like y’all are actually quite chill with each other but I’m just super interested in like how people feel about the Epilepsy Advocacy community in general/strengths/weaknesses as I was thinking of getting more involved.
I would take a peek for myself but I know I will just fall down a rabbit hole hard and would love to hear what a seasoned person in the community thinks.