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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Do Your Loved Ones Support You On This Site

Do Your Loved Ones Support You On This Site

I have found out a few people have basically been "spying" on me in a way. They are people who know me in person, family members and such, who will access this site to see what I post, but they are not on here to "show support". More so of a "what is she saying/doing" type thing
I am really upset by this. It is 1 thing to use the site for supporting loved ones....or for research or learning.... or even just to be apart of it in general
But to use it to basically "gain information on… read more

A MyEpilepsyTeam Member said:

I understand the feeling of that,
Actually I started to feel like most of my family were looking at me with shame, but I think I can be stronger than that feeling so are u and everyone on a situation like this, all I will say is be strong and keep going u will feel much better after a few days

posted 6 months ago
A MyEpilepsyTeam Member said:

I experienced something like this when I was younger. Please don't let this experience keep you from getting the healthy support you may find and need from your friends on the team.
P.S. I like the McAfee idea !

posted 6 months ago
A MyEpilepsyTeam Member said:

I’m sorry that’s happening to you for me personally the only person who knows I use this site is my mum and she wouldn’t come on to this site to see what I post I get support without anyone checking up on me I would recommend changing your username and password that’s it’s only you that’s on here and you get the support you need x x

posted 6 months ago
A MyEpilepsyTeam Member said:

I am not aware of this happening to me. But I was part of a high control group and I am sure they have trolls watching wherever I go. Its a reason I left FB and other social media. But so far here if us with epilepsy have a genuine love for each as total strangers with a bloodline through this. That is my bond. I could go "naked and exposed as in a theatre" here and not care what the outside world sees. I am alone in the outside world there is a small exception of people I communicate with between family and neighbors thats it. I hope you can draw strength 💪 from us to overcome the negative spies that unfortunately exist the nasty flies on the wall.

edited, originally posted 6 months ago
A MyEpilepsyTeam Member said:

If they are using tracking apps she needs to install internet security on her phone and home computer like McAfee security I have both on my phone and computer and do get prompted if I would like all tracking from various sites to me removed.

posted 6 months ago
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