Is being dx'd as an adult w/E harder to accept?

[Belinda5000]

I've had people tell me it's easier for me to have epilepsy since I was diagnosed as a child.I don't agree It's been all my life having sz's.

I've never driven and only worked 3 jobs because of my seizures.
I've never been controlled, and I don't think it's easy for anyone that's not controlled.

I don't want to start an argument just a discussion here is all.


Belinda:agree:

 

[Cint]

I started having seizures when I was 22 years old. They started as CPs and slowly turned into TC's. I went to the dr. while experiencing only the CPs, the idiot back then said I was hypoglycemic without doing any testing. I was working in the airlines at the time, so it really put a huge hamper on my life. Then 3 months after seeing this stupid dr., I experienced my first TC seizure on my way out of the shower. I suffered 2nd and 3rd degree burns and was in the hospital for 2 1/12 months. There went my career in the airlines......... my seizures have been refractory...... I've tried 11 meds, had brain surgery, and now the VNS is the only thing that works for me.

So, YES, being diagnosed as an adult was much harder for me. I lost my career, friends and sometimes my freedom. People say things like, "You don't look like you have epilepsy." or "We all have our problems, get over it."

 

[N Sperlo]

I think the transition in lifestyle is harder to deal with as an adult. There can be a lot of changes to be made including financial problems. A younger person just has less to change and less responsibility.

 

[Zolt]

Hi Belinda

I think it's a lot easier to deal with the big E as an adult then to have to deal with it as a child. Plus not having it till later in adult life, one knows how to relate to the times without it and how it's affecting one now.

The less time one spends with E the better. I started to have epilipsy when i was 38, after the removal of a basebal type tumor. So big that if it would not have been found when it was found, i could of went into a coma. I'm now 46 and I am happy i had those 38 yrs without epilipsy.

Lets face it, life with the big E sucks and the less time you have to deal with it the better. But, I always say life with E is still a lot better then being six feet under.

Zolt

 

[Fedup]

Belinda5000

I think you are right it has to be harder but like you I do not know, I have wished for times with no E just to see what it is like. As an adult you have to make changes to your life once you have E but as a child those changes are made for you, you have no choice in what you do for the rest of your life. You never get to experience life as a child or an adult the restrictions are all ready there and as you get older you realise these restrictions and what you have missed. I will never get to experience life without E that choice has been made for me already as well. The choices I would like to have experienced and yet I am resigned to the fact I will never know what life could be like.

 

[arnie]

I'm glad I was diagnosed as an adult (23 years old). Although I probably had a seizure disorder for much of my life, I never had a witnessed tonic clonic and any partials I may have had were not dramatic enough for people to worry about. I know that had I had that diagnosis my mother would have been much too protective of me, would not have wanted me to ride my bicycle, get a driver's license, go rock climbing, go away to college, etc.
There was also more of a stigma attached to "epileptics" 50 years ago than there is now, and I'm glad I didn't have to grow up with that label. As an adult, a husband, a father, a person on his way to a professional degree, I was much more well-equipped to deal with the diagnosis and I had a solid enough identity that I was not defined by my condition.

 

[MAB]

I'm glad I was diagnosed as an adult (23 years old). Although I probably had a seizure disorder for much of my life, I never had a witnessed tonic clonic and any partials I may have had were not dramatic enough for people to worry about. I know that had I had that diagnosis my mother would have been much too protective of me, would not have wanted me to ride my bicycle, get a driver's license, go rock climbing, go away to college, etc.
There was also more of a stigma attached to "epileptics" 50 years ago than there is now, and I'm glad I didn't have to grow up with that label. As an adult, a husband, a father, a person on his way to a professional degree, I was much more well-equipped to deal with the diagnosis and I had a solid enough identity that I was not defined by my condition.

I was just DX'ed last month at age 57. I'm glad I did't get it until my adult years as there really was a stigma. My mom is gone now so she doesn't know. I have wondered what her reaction would have been if she knew. I remember her warning me to stay away from a certain kid when I was young because he had "fits". He was epileptic.

 

[Cint]

I remember her warning me to stay away from a certain kid when I was young because he had "fits". He was epileptic.

I hate those two words- "fits" and "epileptics". A child throws a fit when they are angry and don't get their way. "Epileptic" is soooo old fashioned. Don't call me an epileptic. I am a person who has epilepsy.

I'm so glad I don't live in the dark ages and can educate people about seizures and epilepsy.

 

[QueenieKP]

Probably not a picnic at any age.

As a child, you fairly voiceless and your parents are your medical proxys.

As a teen, your already in transition between childhood and adulthood and adding in a condition that has the potential to be an arse to control, have medications with a bucket load of side effects and risks interfering with rights of passage like drinking, driving (not at the same time obviously) and living independently.

As an adult, it can interrupt your working live, driving, relationships medication side effects (again).

Perhaps, the older you get you could argue the more life experience and resilience you have to deal with things but it all depends on individual circumstances.

Q

 

[MAB]

I hate those two words- "fits" and "epileptics". A child throws a fit when they are angry and don't get their way. "Epileptic" is soooo old fashioned. Don't call me an epileptic. I am a person who has epilepsy.

I'm so glad I don't live in the dark ages and can educate people about seizures and epilepsy.

I understand completely. I don't know that my mother would be very accepting of my DX today if she was still alive. My mother was a difficult person to get along with at times and had a hard time expressing love. She was a alcoholic and I think all the drinking damaged her brain.

 

[arnie]

Having worked as a medical social worker for many years I think it's pretty safe to say that the younger you get a chronic disease or disability of any sort the more profound an impact (usually negative) it will have on your life (and your family's life) and the more it will become a part of your identity both from your own and others' perspectives.

 

[BrandiBrat]

Being diagnosed as an adult, I mourned the loss of my neurological health. I went from running a marathon every other month and working on my PhD, to having to ask my daughter how to spell words like chicken and to drive me to the grocery store. I can't imagine how life would be like as a child with E, but I know the sudden life-changing event as an adult sure sucked.

 

[chmmr]

Granted i have never dealt with epilepsy myself (but my almost 4 year old daughter has it), but to quote a facebook video that was going around lately "i think hard is just hard." There's different kinds of hard and it affects everyones life differently, but in the end, all E is hard and it just sucks. period. It's unfair for anyone to tell you Belinda5000 that your E is any easier than their epilepsy because they aren't the ones living with it and dealing with the complications and problems associated with it.

Hugs to everyone that deals with/lives with E

 

[arnie]

Wow, Brandi, it really sucks how badly your epilepsy has affected your life. I'm lucky in that it hasn't really affected much of anything I have wanted to do, and didn't really mess up my brain too bad. I'm starting to see some real problems with short term memory now, and that is kind of scary, cuz I know it ain't gonna get any better. I'm probably going to get VNS placed which I hope will at least cut down on the number of simple partials I have, and the meds I have to take, so my brain doesn't get fried too much worse than it is. I'm only 55 and want to get at least another 35 years out of my brain and body! Best to you!

 

[BrandiBrat]

It took a while for things to settle down, that's for sure. My seizures are much better now and I'm slowly getting back to where I was....but the first year was rough. I'm running again (registered for the Walk to End Epilepsy next weekend!) and have a couple seizures a month, compared to multiple per day, as before. I wish you the best with the VNS, Arnie! Keep me posted

 

[Cint]

I can relate to Brandi. My kids had to help me out with rides and helping me remember how to spell words, remember friend's names, names of objects around the house etc. I had CPs as well as TCs. The VNS has eliminated my TCs, thankfully. But still have an occasional CP. I'm only 56 and my kids saw some very scary seizures and thought I wasn't going to make it. It was very difficult for me to have my kids witness those awful, scary TC seizures. I sure hope to god I won't have another one now that I have the VNS.

 

[BrandiBrat]

Cint, it's like a game of charades everyday, isn't it??! lol

My daughter: Mom, I'm gong to the kitchen, do you want anything?
Me: Yes, please. I'd like some.....umm, shoot....you know....that clear liquid that comes out of the kitchen faucet....
My daughter: Oh jeez, ok I'll bring you some water.

LMAO!

 

[DayDreamer]

My brother outgrew his childhood seizures. It is possible he still has simple partial seizure, that do not impact his consciousness or health. If so, he does not care. I grew into seizures right before the age of twenty.
I am ever so grateful I did not have a diagnosis of any health condition during my childhood and adolescence. My view of my self would have been worse than it already was. Living through secondary school was hard for me with no health concerns besides my own disregard.
My brother has a higher intelligence than I do, but his depression and motivation seem more affected than mine. He never felt motivated to do well in school, even though he is very capable. Who knows the cause.