what to tell who?

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New Member

Date Joined Jan 2007
Total Posts : 17
   Posted 3/21/2007 4:11 PM (GMT -6)   

Hey everyone,

Does anyone else feel like they can't really tell there friends everything that happens? I am currently going to college out of state and over the past 3 years my friends have become a really big part of my life. But I feel like I can't tell them when I am worried or not sure what to do when little things happen. Sometimes I tell them but then they just get worried too. They get so worried and paranoid that I get annoyed at them but I fell like I can't tell them to back off without hurting there feelings or hurting out friendship. Also some people in Student development(I am going to college) do not want me to tell my room mates everything that happens. The people in student development do not want me to worry my roommates and interfere with there education. When I get big twitches I do tell someone but it is really hard for me sometimes to feel like I can't talk to my friends about epilepsy stuff. Sometimes they do ask me questions about it and I answer them the best I can. I try to tell them stuff even when they do not ask questions but good times just do not happen. I try to keep my mom in the loop but sometimes that can be hard since we live so far apart. How do you guys balance safety of yourself, safety of your friends, relationships, and your work?

New Member

Date Joined Mar 2007
Total Posts : 13
   Posted 3/21/2007 11:20 PM (GMT -6)   
Hi Turtlegirl

I know what you mean, if I have a turn I don't always tell people. It depends on how serious or obvious the turn was, I usualy tell my Mum about any turns I have because we talk on the phone reguarly and she can usualy tell when I'm not feeling well & if I don't tell her that I took a turn & she knows I'm not well she worries.

The only person I tell all my turns to and how I'm feeling to is my best friend because I know she just listens to me and doesn't get really worried like other people.

I get mixed reactions from other friends if I tell them that I take a turn, usualy people expect me I should rush to the neurologist, others find my turns amusing whihc is why it's easier just not to always tell people if I take a turn. I know most people just worry & are looking out for me.

Veteran Member

Date Joined Jan 2006
Total Posts : 2408
   Posted 3/29/2007 2:24 PM (GMT -6)   

Hi there,

I am at University in the UK and I have lived with friends for 18 months and still do at the moment. For me, it was important to tell my friends what was what just in case anything happened. It made things a bit weird to start with. I felt they were always checking me and watching. But that soon passed. Sure enough, I have had 3 seizures with my friends and they have been really good with me. It was important to ensure my own safety but at the same time, I wanted an element of privacy. Finding the balance was what was important to me. It is slightly different for me as I dont appear to have twinges / auras. Instead I just go down like a sack of spuds!

Its important to tell anyone where your safety is at risk. (For example: If you work with heavy machinery or drive). I also think it is important to have someone who you can always talk to. In this case it sounds like your mum. Keeping things to myself nearly drove me round the bend! lol. For me, the safety of your friends is something that only they can really control. When you are not having a seizure you shouldnt have to worry anyway. When you are, you have no control over what they do. Perhaps this is something that you can advise them about and let them make their own choice; its one less thing for you to worry about. As for relationships, I really can't say anything about this as I have never had one. I don't see how it would be too different to having a good friend.

Hopefully this has been of some help. There are always people here at HW who will listen to you if you get stuck


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