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10 Ways to Connect with fellow Epilepsy warriors

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Christalle Bodiford

10 ways you can (easily) connect with fellow warriors

Whether you are newly diagnosed or have had a diagnosis of epilepsy for a long time, connecting with others with epilepsy can be challenging, due to many factors…  I'm going to share 10 ways you can (easily) connect with fellow warriors.

#1: Share Your Story

I know it can be scary, but sharing your story educates people about epilepsy and gives insight to what it’s like to live with the disorder.  Sharing your story also empowers others to share…  When we share our stories, we help end the stigmas surrounding epilepsy by not hiding behind our disorder.

#2: Community Events

Non-epilepsy related events are just as important as epilepsy related events!  I’ll give you an example that happened to me recently… My husband and I took our pup to an event for dogs at a local dog park/restaurant.  The business is pretty neat…  They have a nice fenced in dog park, and seating outside the dog park for humans to eat, drink, and hang out.  As we were sitting with our pup, eating, and taking it all in, the lady beside me commented on our eating habits.  You see, my husband is a vegetarian and I am on the Ketogenic Diet to control my seizures.  Our order consisted of Bacon (for me) and a vegetarian sandwich for him.  I was putting nut butter on the bacon and eating it, as Brek ate his veggie sandwich.  We all laughed at the contrast in diet preference, and I shared with her why I eat the way I do. Turns out her daughter, sitting across from her at the table, has epilepsy.  We talked about not having proper support, feeling isolated, and I shared my story with them. You never know where you will meet someone that understands what you are going through, whether they have epilepsy or not.

#3: Warrior Hangouts

This might possibly be the easiest way to connect with other warriors…  It takes the focus off of you and puts it on us as a community.  Beginning September 20th, Life Elektrik will be hosting virtual hangouts via Instagram live. 

We will host two per month: 1 for US residents & 1 for UK residents.  Our Canadian friends are welcome to  join the US Warrior Hangout, but everyone is welcome to join either hangout no matter your location.  When we go live for the US Warrior Hangout, we will be chatting with US based warriors.  When we go live for the UK Warrior Hangout – You guessed it! – we’ll be chatting with UK based warriors. 

Join us for our first month of Warrior Hangouts, and check out the details here:  https://bit.ly/2NEXz3B

#4: Social Media Comments

We all have those accounts that speak to us.  They share their stories, struggles, and triumphs…  We follow them, because we feel inspired, motivated or can simply relate to their content. 

Go ahead, leave them a comment.  Tell them why you feel a connection with them and little bit about your story.  If they are authentic, they will respond authentically.  There are so many accounts that focus on epilepsy, self-care, health, and living your best life with or with a chronic illness/disorder.

#5: Direct Message A Fellow Warrior

Have you ever chatted with a fellow warrior?  It’s really refreshing to talk to someone that understands the daily struggles of living with epilepsy.  We may have different types of epilepsy and different causes for seizures, but we are all fighting to live as “normal” of a life as we can. 

Talking to someone that understands what it feels like to have a seizure and deal with the social aspects of the disorder can help to make you feel like you aren’t some type of weirdo and understand that other people do have some of the same challenges and experiences as you. 

No matter how you reach out:  Instagram, Facebook, Snapchat, Email, etc.  just know that your message is probably just as helpful and supportive to the person you are messaging as it is to you!

#6: Facebook Groups

I have a love/hate relationship with Facebook – especially their groups.  These can be extremely beneficial for people that feel they are lacking support; however, they can also be a place of ignorance.  When choosing a Facebook group to be a part of, ensure you are joining a group that has a philosophy of positivity.  There are TONS of groups for epilepsy, chronic illness, and disorder support.  If you aren’t sure where to start, be sure to check out our Life Elektrik groups on Facebook: Life Elektrik Warriors (Worldwide Group for All Warriors)
https://www.facebook.com/groups/LifeElektrikWarriors Life Elektrik Dothan (Dothan, Alabama, US Warrior Meetup Group)
https://www.facebook.com/groups/LifeElektrikDothan/ Life Elektrik Austin (Austin, Texas, US Warrior Meetup Group)
https://www.facebook.com/groups/LifeElektrikATX/ Life Elektrik London (London, England, UK Warrior Meetup Group)
https://www.facebook.com/groups/169555840393038/

#7: Warrior Meetups

Warrior Meetups are a great way to connect with your local epilepsy community.  Life Elektrik currently offers Warrior Meetups in three locations:  Austin, Texas (US) Dothan, Alabama (US) & London, England (UK).  You can find added support by joining on of our Facebook groups – listed under #6.  Each month, the local ambassador plans a fun event or activity for warriors to attend.  In the past, we’ve done things like:  Meet at coffee shops, roller skating, 5K walk/run, and we have tons of fun planned for the remainder of the year and 2019!  Visit our Events page for more info. Austin Ambassador: Christalle Bodiford  (Instagram:  @ChristalleBodiford) Dothan Ambassador: Dawn Hicks  (Instagram:  @HickstersLife) London Ambassador:  Nathan Harvey  (Instagram:  @NathTheDad)

#8: Seminars & Workshops

I know what you’re thinking… “BOOOOOORING,” right?  But really, what could be more exciting than learning more about epilepsy and how it relates to our bodies!?  Not to mention, when you attend epilepsy related seminars, workshops, conferences, etc. everyone there has the same purpose…  To learn more about epilepsy.  I don’t think you’ll find a more inviting community than the one you’re already a part of! 😉

Get your notebook and #2 pencils ready, takes notes, share your newly obtained knowledge with your community, all while making new connections in the process!

#9: Coworkers as Allies

Much like sharing your story, telling coworkers you have epilepsy can be scary.  It can also be an opportunity to educate and gain security…  How? By sharing you have epilepsy with trusted coworkers, you can ensure your safety in the workplace.  I’m very open about having epilepsy, but you don’t always have to be… 

Just pick 1 or 2 (in case one is absent) coworkers that you work closely with and trust, tell them you have epilepsy, and explain to them what to do if you have a seizure at work.  always keep your I.C.E. info and seizure first aid card at your desk or on you, in case a seizure occurs.

#10: Online Communities

Much like Facebook groups, there are many online communities that are specifically for people living with epilepsy. 

When I was first diagnosed and looking to connect with others, I used to participate in the Epilepsy Foundation’s web based chat rooms and message boards.  They also helped me to better understand that I wasn’t alone in the feelings and experiences I had. 

There are so many options today to choose from…  If you aren’t having luck in other areas of connecting, be sure to check out websites like YOOCAN for additional support!  (They are one of my personal favorites.)

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