Post # 1
Officially I was diagnosed with epilepsy about 4 weeks ago. But I wanted a second opinion, heck I’m 25 it’s hard to believe now after all of this time I have epilepsy!
So I went in to the neurologist today for my second opinion to feel comfortable with the diagnosis before taking the medication. Sure enough he confirmed the diagnosis. So I start on medication tomorrow morning. Sigh…
So I’ve told my mom about it and my brother and husband (got married April 20th) and my Grandmother since she was taking me to the neurologists appointments. That’s about all I told.
My Mother-In-Law asked about it on a couple of occasions and I told her they were doing the tests but never told her the results.
Now I’m wondering who I should tell and who doesn’t really need to know. So I’m here for opinions. I definately don’t want to tell everyone. I don’t want those pitty faces or pitty posts on facebook. It’s my personal information and I want to keep it that way. But I know some people would want to know. Should I tell them? Like my Aunt who I am really close to and is the bridge between me and my dad? Or my Mother-In-Law who I am also close with and already knows? My best friends? My job? I don’t know who needs to know, who should know and who would be best left not knowing anything. But with my luck, everyone will know in a couple weeks as a certain person who already knows likes to tell everyone everyones business.
And how would you go about telling the people you want to tell? Just send an email or call them and say “Hey, by the way I have epilepsy”?
Post # 3
I found out I had cancer two weeks ago. I’m so sorry about your diagnosis. I know these things can come as a shock and be hard to process.
I think that you should tell who you want to tell. My husband knows, but that’s all.
I think if you want to let other people know, I’d probably start out by mentioning that I’d been ill and that the doctors had finally diagnosed me with epilepsy. Then I’d let them ask questions, since a lot of people may not understand what this means or how it will affect your life on a day to day basis.
I don’t think you’re obligated to tell anyone you are not comfortable with telling. I’m one of those people who believes your health is your own private business and you don’t *need* to tell anyone you don’t want to share with.
Post # 4
I definitely think you need to tell your job. Not as in a general announcement to all staff there but if your epilepsy means you could have seizures at work/endanger yourself it is important that some key people there are aware what is happening to you and know what to do in that situation. I know (having worked in discrimination law) it can be scary to tell work about medical situations as you don’t want it to effect your employment but you have an obligation where it could affect your work.
Will your epilepsy require you to wear the medic-alert bracelet?
Good luck to you!
Post # 5
@stuckinwonderland: I am so sorry to hear you were diagnosed with cancer. That must be so hard. And here I was throwing myself a pitty party today. I thank you for replying to my thread.
I will take what you said to heart and for now I think email my aunt and my Mother-In-Law
Post # 6
@kris325: Throw a pity party, dear. It’s rough to get a diagnosis like that. Epilepsy will impact your life. You have every right to be upset and scared and even angry. I wasn’t trying to compare problems, just saying I understand since I have a new diagnosis myself. It’s hard to really know what to do and I even had trouble figuring out what to say to my husband.
Just take it slow and make sure to tell people who will be supportive. You need people in your corner to navigate new uncharted waters.
Post # 7
I have a seizure disorder (not epilepsy) and decided to tell people who it might impact.
Example: I had a seizure in my college classroom and no one knew, so everyone flipped out.
Two years later, I had one at work but my two managers knew about it and knew what medication I took so they knew what to do.
Personally, I think it is important for family to know, and tell someone at work who you trust. That way if you do have an episode and whoever you are with calls someone in your family, they can explain what’s happening and you don’t end up in the ER if you don’t need to be there.
Post # 8
First, *hug*. I was diagnosed with TLE (temporal lobe epilepsy) last year, and I didn’t believe it either (29 years old, no history of seizures, no seizure history in the family, etc). I’ve adopted the whole mentality that I’m not hiding it, but I’m also not shouting it from the rooftops. Of course, I come from a family that thinks a hangnail is a life-and-death diagnosis, so mainly I don’t want people treating me like I’m made of glass (or the pity…ugh).
I still have trouble figuring out who I should tell and who I shouldn’t, and right now it’s limited to my Fiance, my parents/brother, and my work colleagues. My cousin knows, but only because we one time had a random conversation about prepping for TTC and the prescription meds we take (she has chronic migraines, so it was nice to have another “naughty neuron” buddy). I would think it depends on how prevalent your seizures are and how well your medication works to prevent them. My seizures manifest as hallucinations, with behavior more like an absence seizure– I zone out, don’t respond to stimuli, etc. If I have one in front of someone, they might think I’ve lost track of my thoughts or I’m daydreaming. Pretty much, if I think telling a particular person is going to cause more drama or pity or what-have-you than not telling them, I don’t say anything.
Hang in there, lady. Get yourself comfortable with it first, and then worry about who you might want to tell next.