Has anyone been abused because of having epilepsy?

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phylisfeinerjohnson
Regular Member


Date Joined Oct 2009
Total Posts : 56
   Posted 1/29/2010 10:19 AM (GMT -7)   
My abuse wasn't physical, it was emotional...

My mother and step-father (a surgeon!) refused to acknowlege I had epilepsy and ignored all the falling, passing out, walking into walls, etc.

My father was a "beater", but he never touched me because I was already "damaged goods." But every time I would have a seizure, my step-mother would scream: "WHAT IS WRONG WITH YOU?" What a charmer. And she was a psychologist, to boot!



phylisfeinerjohnson



Phylis, please do not put any more links in to your personal website until you have contacted the administrator for permission.

Post Edited By Moderator (Jeannie143) : 2/3/2010 12:32:34 AM (GMT-7)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 1/31/2010 8:34 AM (GMT -7)   
Phylis,
This is clearly a case of abuse. Have you gotten therapy to help you with this? If not, please think about it. That goes for anyone else who has this issue. Especially since people with disabilities are more vernerable.
TC,
Navy
P.S. I know it will difficult to find a therapist you trust, but I encourage you to keep trying. It can take many different ones.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


phylisfeinerjohnson
Regular Member


Date Joined Oct 2009
Total Posts : 56
   Posted 1/31/2010 8:46 AM (GMT -7)   
Jeannie,
 
I have no book.  I don't sell anything.  I am a pro bono volunteer for The Epilepsy Foundation of Eastern Pennsylvania.  And I have a personal website: to help people.  Perhaps you should visit the website, before you make any accusations.
 
phylisfeinerjohnson
 

Post Edited By Moderator (Judy2) : 1/31/2010 10:09:50 PM (GMT-7)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 1/31/2010 4:52 PM (GMT -7)   
Phylis,
Let's follow this website's protocol here. I think it might be as good idea to contact the website owner at admin@healingwell.com if you want to add your site to resourses or have permission for it in your posts. Because it does seem to fall under some rule violations since you request "please make a contribution to become an advocate, too."
Please realize that it might take quite some time to get approval. It would be appreciate it you would please leave it off your posts until it is approved by admin.
Thanks.
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


phylisfeinerjohnson
Regular Member


Date Joined Oct 2009
Total Posts : 56
   Posted 1/31/2010 8:21 PM (GMT -7)   
I'll do even better.  I'll stop posting.

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 2/1/2010 8:55 PM (GMT -7)   
I apologize for accusing you of having a book. Apparently I didn't read your enough of your website to see that although you are a freelance promotional writer you don't have a book, only your site. I'm very sorry about that. It must be scary whistling in the dark trying to get people to listen about epilepsy. Please don't be a stranger. You can help people here. You simply can't promote your website without permission.

Just send an email to Peter and ask. He's very nice.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


phylisfeinerjohnson
Regular Member


Date Joined Oct 2009
Total Posts : 56
   Posted 2/2/2010 6:11 AM (GMT -7)   
I don't even know how to contact Peter.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 2/2/2010 6:58 AM (GMT -7)   
admin@healingwell.com


He's mainly concerned about people soliciting donations or selling products here, so please do contact him. No one wanted to keep you from posting, but the mods are committed to observing forum rules. Good luck!

Admin
Forum Administrator


Date Joined Jan 2003
Total Posts : 9658
   Posted 2/2/2010 3:23 PM (GMT -7)   
Thanks Phylis... I have responded to your email directly.
Peter Waite, Founder/Editor
HealingWell.com - Community, Information, Resources
www.healingwell.com


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 2/2/2010 5:44 PM (GMT -7)   
I think everybody has posted enough on this situation. As moderator, I am at fault for overlooking the link. By the name of it I assumed it was part of the EFA, a fine organization dealing with epilepsy. The fact the you volunteer with them makes you a wonderful asset to our forum.

I always appreciate you updates and attempts at getting conversations jump started. Please reconsider leaving, you would be missed. I think there were some misunderstandings that can easily be smoothed over. If anyone was a fault, it was me for not alerting you about the forum's guidelines about links.

I sent you a personal e-mail.

Stella Marie

Moderator for Chronic Pain and Epilepsy

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump & neurostimulator.  Extra features: O2 & wheelchair.

 

 


confirmaton
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/3/2010 7:18 AM (GMT -7)   

Hi Phylis,

I am sorry that nobody believed that you had epilepsy!! It happens with so many of us with epilepsy. At one point a neurologist did not believe I had epilepsy,  after all of my seizures, my EEG's proving it. I was diagnosed with epilepsy when I was 6 years old.

I look forward to reading more of your website.

confirmation


Post Edited (confirmaton) : 2/3/2010 7:22:01 AM (GMT-7)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/3/2010 7:43 AM (GMT -7)   
Phylis,
I want to assure you I do have empathy for you. I am sure this made life terribly difficult when your own parents were not supportive caring adults. I am always interested in people's resilence process and have been wondering have you got help in dealing with this? Did they become more supportive? Or is this something that you have just had to deal with on your own? I am sure going to any kind of mental health care provider must be scary (especially given your experience). I hope you know that not all mental health care providers are like that.
Please take care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/3/2010 7:53 AM (GMT -7)   
Confirmation,
Welcome to the forum. I am sorry to hear you have struggled with this as well. There is a terrible corelation between disablities and child abuse.
TC,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


confirmaton
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/3/2010 8:01 AM (GMT -7)   

Phylis,

This is a very sensitive time for you. You must stay on your website.  It will take time and be hard for admitting this problem.

Remember, we all have problems that are hard to deal with. I know I do!! You are helping a great many people, do not stop now.

 

Thank you Navy. It is very hard to deal with the problems between abuse and disabilities. I have had epilepsy for 60 years, now. Phylis has been a great comfort and help for me and many others.

confirmation


Post Edited (confirmaton) : 2/3/2010 8:09:02 AM (GMT-7)


phylisfeinerjohnson
Regular Member


Date Joined Oct 2009
Total Posts : 56
   Posted 2/3/2010 8:08 AM (GMT -7)   
I will stay on my OWN website, but not this one...

confirmaton
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/3/2010 8:12 AM (GMT -7)   
Phylis,
 
You are very sensitive right now. Do not make any sudden deciscions on the spur of the moment.
 
confirmation

confirmaton
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/3/2010 10:08 AM (GMT -7)   
Hi Navy,
 
Thank you for welcoming me to HealingWell. I am sure I will enjoy it here.
 
Yes, I had child abuse. Mine was emotional child abuse. It is hard to handle. It is hard to admit, it is very sensitive. I am 66 years old. It started when I was diagnosed with epilepsy in 1949. I lived in a family where epilepsy was hereditary. If you got found out, you were disowned from  my family.
 
My sister and I both had epilepsy. My father bought a ranch to keep us away from his relatives. That was the abuse, my father, mother, sister and I had to keep  away from my relatives.
 
When my father died, I was not allowed  to go to his funeral. What if I had a seizure there. That would be embarrassing to the whole family. My epilepsy is more noticeable than my sister's. I have been disowned from my family ever since then. I have no idea what has happened to any of them.
 
My daughter ran away from home as soon as she was old enough too. I have 3 grandchildren  that my daughter and son-in-law have never let me see grow up. They have avoided me at all costs. They are now adults. When I have great grandchildren, I will never know it. Why? I have epilepsy.
 
Thank you for listening to me. confirmation.
 
 
 

Post Edited (confirmaton) : 2/3/2010 10:18:38 AM (GMT-7)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/3/2010 11:01 AM (GMT -7)   
Confirmation,
I am so sorry that you have all this going on. Not only your dad, but now your kids as well. I am glad that you were at least able to have children. I think therapy has really helped me with being ill, especially when it comes people who do not deal well with being around people who are ill.
Please take care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


confirmaton
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/3/2010 2:32 PM (GMT -7)   
Hi Navy,
 
Phylis has never solicated donation or selling any products. She gives us great information that helps me and everyone who is at her website. Are you accusing her of these things, they are not true.
 
I deal well with what is going on. It is my family that does not. When I first found out that I had epilepsy, I told everyone. I have told everyone all along. To me, that is the best thearpy. I never hid in the closet. I was diagnosed with epilepsy in 1949
 
I always figured that if they were my true friends they would accept me as I am. If not, then they were never my friends.
 
confirmation

Post Edited (confirmaton) : 2/3/2010 2:41:53 PM (GMT-7)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 2/3/2010 4:45 PM (GMT -7)   
No one is accusing Phylis of anything. It's just that there is a forum rule about this having to be approved by the Administrator, who owns this site and establishes the rules that allow us to continue accessing it without charge. He has communicated with Phylis and there is no reason for this discussion to continue. If Phylis decided to leave HealingWell rather than to observe the established rules, that is her right and not ours to second guess her.

confirmaton
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/3/2010 7:20 PM (GMT -7)   
Hi Judy,
 
I want to stay in Healing Well and I need to know what rule did she break, so I do not break the same rule?  I am not trying to cause problems, I am trying to learn.
 
I agree, the subject needs to be dropped. I want to stay here. Pylis is a friend of mine.
 
What I told about my emotional abuse is the truth. I did not only talk about Phylis. Am I breaking any rules, here.
 
confirmation

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 2/3/2010 8:00 PM (GMT -7)   
You may read all of the rules by clicking on "forum rules" at the top of the page, or here:


http://www.healingwell.com/community/default.aspx?f=46&m=106997

confirmaton
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/3/2010 8:11 PM (GMT -7)   
Hi Judy,
 
I will read the rules so I do not break any.
 
We will be talking a lot. I have Type 2 Diabetes. I do not have a  support group for my Diabetes Type 2.
 
Sincerely
 
confirmation

Post Edited (confirmaton) : 2/3/2010 8:15:15 PM (GMT-7)


LanieG
Forum Moderator


Date Joined Nov 2006
Total Posts : 5402
   Posted 2/3/2010 8:29 PM (GMT -7)   
confirmation, please come and post in the Diabetes Forum.  There are several members who are type 2 who have discussions about medications sometimes.  We also have some interesting resource material at the top of our forum.
Lanie
 
forum moderator - diabetes
diabetes controlled so far by exercise and a low/no carb diet


confirmaton
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/3/2010 8:41 PM (GMT -7)   

Hi Lanie,

I will tomorrow. It is getting to late tonight. Thank you.

confirmation

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