The good & bad side of SM for Epilepsy

Disclosure: As a reminder I don't go back and correct any mental errors while writing because that is true to how my brain works with living with epilepsy. In order to understand this by someone just joining, one example at times I might speak a seteances out ouf order, or repeat them, spelling.

Social Media & MyGlitch, I figured great topic since back on IG

Living with my uncontrolled epilepsy brings many challenges. I haven't been able to drive for MANY years, and then had to offically medically retire in February 2019. When this happened, along with the new RNS surgery Dec. 2019 and we moved, it all became all too real and I needed an outlet. Imagine also you can't even go for a walk around the nieghborhood with not hvaing someone to go with you. These are a few reasons for me, why I began more active on various SM areas as well as my blog. I wanted to advocate and spread epilepsy awareness on sgharing our family journey, but also making online connections, which some have grown into great friendships.

I also learned quickly rthe good and not so good of all ends of SM, and some very not so great many people out there. I have always been one to think the best of everyone, and well it bit me back. Just a few tips below.

***PLEASE REMEMBER IF YOU USE ANY FLASHING/STROBE LIGHTS IN YOUR SM, LIST A WARNING.

THOSE WITH PHOTOSENSITIVE EPILEPSY, COULD TRIGGER A SEIZURE***

The Positive Side Social Media

One of the biggest things was the ability to connect with others who either live with epilepsy or have family members who do. It gave me another sense of purpose by helping others feel not as alone, and also helping family members know they are not alone either.

A few Examples, I use and others have taught me

• Peer support/friendships/support groups: Once you connect on SM, it may grow into friendshsips which then become zoom or FaceTime calls. Now you can be from anywhere in the world. Also, organizations offer support groups via YouTube/Zoom for those of us who can't attend Glitch groups in person.

• Access to information: Epilepsy organizations and advocates share up-to-date research, treatment options, and lifestyle tips.(Mayo Clinic, Epilepsy Foundations online groups ex)

• Use popular hashtags: This makes it easier to bring attention to epilepsy connections

• Sharing My blog and MyGlitch medical updates: This was great for our family & friends, since we have them all over the country. Whether Brent gave updates when I was hospitalized, or just couldn't respond myself. This way when I don't respond it doesn't trigger "oh no whats wrong now scenrios". It became a so called one stop shop:) My blog created my relationships, I never thought could happen and at times i became a mentor to others.

The Risks of Social Media

My good side and over trusting got the best of me, when I became very active via my blog. I had both my IG and my FB accounts hacked, and they started speaking to my family/friends and I had no idea it was happening. Somehow the email connected to them also got hacked. I couldn't even get the account closed. Hence; why i was off both IG & FB for many years. Brent & the boys gave my medical/family updates via their accounts. I began new to Twitter or X whatever you want to call it, my blog, online Forums/YouTube.

A few Examples, I use and others have taught me now

• Change how you get into your SM accounts: Unlike before you now have face regination along with passwords. So that also helps me, espeically since my memory of the password isn't tjay great either:) Make sure you never always use the same exact password for all your SM.....i was guilty as charged on this one.

• Sharing too much info: This can be a tricky one for me, cause that is what my blog is there for. Others have told me not share medication titles, or my doctors names, detailed medical info, that can be used to verify it is you to someone else.

• Discrimination/Bullying: This is very true for those especially that still work outside the home, people use their SM/blog info against them, in order to help themselves in their career. You can get negative comments to you and abput your family, at times very mean. As you know things that are negative spread like wildfaire where as for some reason the good stuff doesn't.

• Adds stress and potential anxiety: This can be true for some and not others. Reading about others negative sides of epilepsy(or any chronic) condition, could make you question your own health and was i do the right thing or the wrong? Th flip side, you read about how great someone else is doing, then why am I not controlled and I follow drs orders to the tee? Either of these can cause mental stress, fatigue, potentially even efecct your sleep. NEVER compare yourself to others and how they are with their own epilepsy status.

  FINAL REMINDER

  No matter your way of interacting, face to face is the best even if not in person. I tend now to lean on that. If someone does not want to FaceTime/Zoom, I check them out more, before I do any interaction via SM/Phone/email. AS you learned above, I trust too easily, and I learned my lesson the hard way....I still at times do this. I guess I always want to believe everyone is "good".

  
  

Overall my status on SM outlets has become a great one.

I have that social interaction back once again.

Especially now with us being empty nesters,

I am truly alone most of the time during the day.

I now have that online connections that I wouldn't have gained.

I have that purpose that I always want to have back.

Spread our family's MyGlitch story in order to help others.