Unsupportive Family

[LilMissTNT]

Hi all,

I had my 1st attack that landed me in the ER w/tests galore 2 weeks ago, and had another smaller one last Friday. I'm 28, and have no known history of seizures before. Luckily my seizures haven't been too catastrophic, but my EEG was abnormal so I'm being treated by a neurologist & am taking Lamictal.

My youngest sister was diagnosed with epilepsy about 3 months ago after having a series of strong seizures over few months. Hers have been much more severe, many meds have not worked and repeated tests haven't shown much. She is obviously stressed, scared & frustrated.

I've always been strong & supportive for my entire family (and we're a big family-- I'm the oldest of 5). I rarely seek out emotional support, as I have a guilt complex about burdening my family. My dad just had bypass surgery, obviously my sister is going through some tough stuff so when I had my first episode, I really debated whether or not to tell them. But, I figured they're my family and they should know. That was a big mistake.

My first day home, I had to listen to my dad tell me how I'm "stealing" attention from him & my sister, that my family thinks I brought this on myself b/c of alcohol and/or drugs (I haven't done any hard drugs in well over a year, and had no alcohol the night in question), that I faked the whole thing and basically, how dare I add more stress to our family. He hung up on me & left me in tears.

I know he is stressed out w/his own health issues & is worried about my little sister, and I never meant to add to his stress (like I said, stressing out my family is something I avoid at all costs). Since that night, my 3 sisters have basically stopped talking to me as well. According to my dad, my epileptic sister (who I went to for support & understanding) thinks I'm totally out of line for comparing notes, commisserating, etc, with her over "her" illness. Seriously, they can HAVE the attention-- I sure as hell don't want this!

Against my better judgement, I told my dad about last Friday's attack. I was met with the same response, in which he repeated all the same stuff and also confirmed my fears that yes, my sisters are not talking to me b/c they think I am doing this all for attention. He hung up on me again.

I'm not asking my family for anything more than to be treated the way I was before this: going to dinner together, phone calls just to say hi, etc. Now I am just ignored by my sisters & guilt tripped by my dad. My mom (in another state) and brother have been fine, but it still hurts :*(

 

[RobinN]

Of course it hurts. Any life struggles that are not met with love and compassion is extremely difficult to bear.

Genetic epilepsy is rare, but it does occur occasionally. Here is some info on the subject:
http://www.epilepsyfoundation.org/about/types/causes/genetics.cfm

Also PNES - Psychogenic Non-Epileptic Seizures also occur. The cause is usually given as stress or emotionally induced, but I believe it can be a chemical imbalance as well. This is not faked. It is the brains protective power reaching its threshold level.

It appears that you need to find yourself a new support system, as the original one has failed you. I love my family very much. I am the youngest of 5. I typically find my support outside of my family unit.

 

[Endless]

Wow... my heart goes out to you. <<<big hug>>>

I kind of know how you feel. My family said supportive things at first, but then just went POOF and dissapeared. No support materializing. My sister who lives 10 minutes away never calls, never offers to drive me to the store or anywhere else, so I have to carry groceries over 4 miles. My sister has told other family members that really I'm crazy. My aunt and uncle have been comforting over the phone, but they live too far away to be of much help.

Old family patterns are hard to break. Like Robin, I get my support outside of my family, too. I have good friends that help me whenever I ask, listen to my problems, call to see how I am, and take me out for lunch once in awhile. My friends are really my family.

Nothing can replace this forum for me, though. The people in here are the only ones who understand what I'm going through and how I feel. I'm so glad it's here.

 

[Nakamova]

I'm sorry your family has taken this tack. They may come around eventually, but it sucks that they are behaving so poorly now, when, given your sister's diagnosis, empathy should be forthcoming. Is it worth asking a family member to come with you to your next neurologist appointment? Then they might get a clue...

If it's too stressful to get support from your family, then you need to find your "family" elsewhere, as Robin and Endless have suggested.

I hope you have others whom you can count on for the love and support you deserve.

 

[gigi]

the tie that binds

So sorry for the double wammy, epilepsy AND no familial support. Unfortunately, family does not always mean support. They are, after all said and done only human, and our expectations for them can be high when facing a crisis. As is well advised, seek support else where, and hope that "they" will come around. It becomes an exercise in futility when we force our situation on a family that is ill equipped emotionally to be our support. After all said and done, we can become our biggest fans, then seek out others for a secondary support system, aside from the obvious medical attention we need. Personally, my family is more the silent types when referring to my E.- they are there but distant when it comes to discussion about my E. When I bring up the subject, everyone looks at me as though a booger is hanging out of my nose, at which point I feel uncomfortable. (diagnosed in 1969) Since the inception of the internet, I have been on a mini crusade to improve my health. I mostly keep this to myself, as I feel like the Fam. looks on me as a health nut, instead of improving my quality of life. Well, neh-na neh-na boo boo, I am in better shape than both my brothers for my efforts! Sorry, just had to throw that out there! Focus on yourself, and your needs, instead of trying to gain approval and validation from your family. You are worth it!! :clap:

 

[huskymom]

Some people are soooo clueless! Sounds to me like your dad and sister are the ones who want all the attention. Was your sister like that growing up? She may have learned it from your dad. I agree with everyone else.....you can't pick your family, but you can pick your friends. I am sure that your friends will support you without having to worry about family drama! One thing you don't need is the extra stress! Keep your chin up, and come here whenever you need a shoulder. We are all here for you :hello: