Monday, October 27, 2008

I've been gone for awhile.

I have been reading a lot of posts to different blogs and posts to different epilepsy websites that describe people with epilepsy as having fear and anxiety about their epilepsy. They wonder when they'll have another seizure or what will my friends think about me when they find out I have epilepsy or they see me have a tonic-clonic seizure.

Maybe I'm lucky, or maybe my friends are better or closer than other peoples friends but I don't have that fear. It's also possible that I can't, or won't, recognize my own fear and anxiety when it's right in front of my face.

Is it possible that the people who complain about their friends being turned off or treating them as less of a person don't really have good friends? I think that is a real possibility. I don't know. But when I'm working with people who have epilepsy trying to help them become a little more involved in life and they complain to me about this type of thing I can't help but think that they just need better friends. More accepting friends. Friends who care about YOU not about what you have or what you are.

I guess I like to do this blog thing but I also don't get to talk with others about whats on my mind. Unless, of course, I'm with them.

Epilepsy does not and should not control your life. Ever. We all need people we can trust and who will forgive us and who we can forgive. Good friends.

Rob

2 comments:

Paula Apodaca said...

Hey---
Just wanted to pop over and say a couple of things:
People have some wierd ideas about epilepsy, and these things get translated into how they behave toward persons with epilepsy. Doctors are, so far as I know, people. As such they are not immune and in the course of one's travels through the medical and medical professional community, one may come into contact with individuals, including docs, who suffer from bigotry toward epilepsy and pwes.

There are some docs who believe that pwes malinger or look for status as an ill person by saying they have epilepsy. It doesn't make sense. They know btter by virtue of testing, but the feeling is overwhelming in them and so they react toward epilepsy patients with hostility.

Making someone "prove" they need their meds is cruel and unethical medical behavior. It means that the doc intends for you to go off someplace and have a seizure, have it documented somehow, and then come back with the proof before he will write you a prescription for your meds.

It doesn't make sense, but these guys are out there and they practice on us!

I didn't want you to think I was making this up...
Best,
Paula

Reeb said...

Hi Paula,

I've been involved with the medical community for so long both in my work place (a local epilepsy foundation), and in my personal life with epilepsy that I find it hard to believe that a neurologist would do such a thing. Maybe an internist or some other kind of doc but not a neurologist.

I don't doubt that this occurs but if, or when, it does occur I'm sure it has a lot to do with the poor access people have to good medical care. Many of those people who have epilepsy can't hold onto a job and don't have medical insurance. That's the real crime. As you say doc's are people and they suffer from bigotry as do others but all people should have equal access to good health care.

Reeb