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UPDATED: Tue, 08/19/2008 - 10:01pm
Sludge
Family stigma
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Hi,
I'm new to this forum and quite an oldie to the condition!
Through my experience and what I have read from our regional website there is a lot of people who seem to be getting stigma within the family. One can understand stigama outside but I feel not enough is done to educate the whole family. This subject I want to bring up at a conference so as many replies to this, no matter where you live, would be appreciated.
Sludge
By Sludge at Tue, 08/19/2008 - 10:01pm | 92 views | 15 comments
Recent Comments on this Discussion
I hope I am not to late to contribute to your data – this is a great topic!
I think the biggest inoculation against family stigma is both education and experience: Most of my family is accepting. We all watched my mother die of breast cancer that metastasized in her meninges. So after that, any other medical phenomenon is relatively minor – especially if it’s not cancer. My grandmother just worries about me, tells me to take it easy. My brother and his family are wonderful. My 10-year-old niece was a little surprise – okay a lot surprised and scared - when she first saw a seizure (I get simple partials), but I think my brother and sis-in-law explained it to her later. Later that same day she became very curious started asking questions based on a health presentation that had at school on what to do if a classmate has a GTCS. So I had a chance to explain to her the diff between partial and generalized seizures. She was cool with it. If only many more people would be calm and ask questions instead of turning their heads away in ignorance and embarrassment! And yay for my niece’s school for their health education!
Here is where the stigma part comes in:
My father and his wife are fundamentalist Christians, take the Bible very literally, and believe that I am possessed with a demon. They have read the appropriate Bible passages and tried to pray me well. I think it was done in good faith, so to speak, and at least they didn’t tell me to stop taking my meds. Now I’m a little afraid to visit them, lest a sz happen and they freak out.
This brings up an interesting thing about educating the whole family – bringing religion into it. Who would educate the family? How many doctors would feel comfortable, or would want to sit down and explain to a family that no, your family member is not afflicted by demons? (Would ultra-religious family members even listen to a doctor?) How could a religious leader be brought in to explain it?
Those are just my two kopecks.
Steph
Hi
Normal
0
First thanks for the compliment about the topic, as I mentioned in a
previous email, it will be quite a few months now until we start further
conferences for people with epilepsy. I
feel we have this site to thank where everyone can have their say and express
their feelings.
I agree with you and also know what it is like to watch someone die of
breast cancer, my mother-in-law died of the condition but she tried to keep
positive right up until the end. Now I
hope you are getting on with your own life, as I’m sure she would have wanted
you to do.
I agree with you about education, the school where your niece attends has
shown a wonderful example to other schools; well done her for asking questions
at such a young age and I did speak on this subject a few years back
The stigma from my generation came
mostly from the adults. As you pointed
out they still had this old Victorian idea that we are mentally ill not a
condition that could affect anyone. So they found this hard to accept after
having been through World War 11, however they did what they could in those
days, even sent me to a Witch Doctor! I don’t want to speak much about myself,
but to give you some example; both my brothers divorced from the mother of my
nieces and nephews, one has still kept up with the family but the other one
makes sure that her daughter things negative of us all. For example, she had her
wedding last August when I had this shock after finding out, on the day, that
my other brother and his family had been invited to the wedding but not myself
and my poor old mother 90 now 91.
Of course there will always be a few who will take religion seriously, like
everything, one cannot bring 100% of children or adults to understand every condition or illness etc.
As long as the schools have tried I would be contented.
You say you have this fear to visit your father, that
is very saddening, are you sure he feels this way as you did mention that he
does pray for you and didn’t mention that he actually told you this is how he
feels? I’d love to have your email as I have this great story about a vicar who
wouldn’t collect me from school after seeing me experience a seizure in his
car, on one of my returns from school with his daughter, the story has brought
a smile to many of the people who, at a time when they were feeling low with epilepsy
and may make your father see that even the vicars have demons in them and we do have a sense of humour, not this demon
he thinks or maybe is that you think he thinks? Have you ever brought the subject up, as I’m sure, if he is
religious at all, he couldn’t go on never seeing his son again? I would try and
explain to him, as I have already pointed out, that anyone can have a seizure
at anytime even himself and that it is a symptom not an illness. You also
asked, how many doctors would want to talk to the family, I know that all the
doctors I have had would only be too pleased to help as much as they can. In
fact I got an email from one lady who mentioned that her doctor had spoken to
her daughters after she had an accident that left her with epilepsy. Also,
that is where the charities can help, asking they wished it to be made compulsory that
doctors explain the condition to all the rest of the family. Naturally one can
never get 100% to understand in any sort of condition or illness etc, so I
wouldn’t be too worried where religion comes into it.
Sludge
I am wondering if anyone can help me?I have been with my partner for 3 years and saw him having a seizure for the first time 2 weeks ago.He had stopped taking his Tegretol.I am worrying since and got some secondhand information from his brother's partner saying my partners brain has been damaged by the seizures as in memory loss,difficulty in processing information etc.He says he recalls the doctors telling them this many years ago.I am wondering how true this is and if there is any way I can get some proper information and answers.My partner has tonic clonic seizures,he is now 31 and has been having them since roughly age 13.He runs a very successful painting and decorating business and i have never noticed anything different.Also is there any truth in saying a person's sense of humour is affected?
Also would love to hear from anyone who had a cavernous haemangioma removed from their brain as my partner had one of these and would like to find out more...
Hi,
First of all, it is very dangerous for anyone to stop taking their medication, unless the doctors have told him to do so.
Yes, we all have some difficulty one way or another with our memory, there are many causes for this, if he has had surgery, the medication he takes and yes the seizures can affect the memory but this shouldn't affect him too much.Have a look at this information about the problmes people with epilepsy may have with their memory, it is from our Epilepsy Association:
http://www.epilepsy.org.uk/info/memory.html
Have you had a word with his doctor who will have all your partner's
medical notes, I am sure he or she would be very pleased to answer
your questions. Have you also been in touch with the epilepsy
association of your country, if you are in the USA they have one called
'Epilepsy Foundation', but they can only give you answers on epilepsy
as a whole not on an individual person.
You mentioned that your partner is 31 which, through my experience, was a very difficult and frustrating time when one's brain is still very active, he sounds as if he has found a very caring partner.
If you want any further answers do not hesitate to ask or, as mentined, do get in touch with the epilepsy Association of your country. I am in England where we have a great forum in their website called, 'Epilepsy Action' with people who are very frendly and only too pleased to answer your questions
Sludge (Cath)
i had my first seizure at age 11, but am certain i had something neurological going on prior to that and in between seizures as i got older. I did lousy in school, was extremely shy, had zero attention span. I was having some sort of seizures in highschool in the seventies. i spent alot of time acting out. went to the nurse alot with strange symptoms, and was soon labled a hypocondriac. i had my first panic attack at age 19. some sort of correlation between the two. I always felt i was weird, and that other people thought i was also. funny thing about all this, my mother was a nurse and did not pay attention to my complaints thinking i was a trouble maker instead.
I am so glad that in this century we are a little more attentive to neurological disorders. I wish it would have been so when i was younger. my self esteem is still not what it needs to be so i work on it daily. i am in a job i am so longer suited for, because of my crapped out memory and slow thinking. at age fifty-one am trying to decide what to do to make an income without a fast paced environment. i do not feel stigmatized so much anymore, just tired and bored. Although everyone in my office knows i have a seizure disorder, and i sorta get this feeling sometimes they are waiting for the fireworks show to start. I have been asked why i have a drivers license. (last seizure 4 years ago, in my sleep) my reply is, do you feel more comfortable with me on the road, or all the alchoholics and drug addicts that number in the millions? As far as my immediate family, there is not alot of discussion about my disorder, and that suits me fine.
Normal
0
First of all, I am sorry to read that your mother didn’t
realize your needs, the same as my father who had been wounded twice during the
war so naturally found it difficult to accept he had a child with a disability.
Sounds as if you were like myself before I started the
actual seizures. I first got hallucinations at the age of five, between that
age and eight I started to feel, what sounds like your reaction. As for being
lousy at school, I got shoved out after I started to get seizures at night! My
parents found another day school but while there I had a seizure in a vicar’s
car, he used to take it in turns with my mother to collect me and his daughter,
after that experience he void he wouldn’t take me again, that was the end of
that school!
As you say, things have certainly got so much better, you
say it was bad in your time, I’m talking of eight years before yourself! At your age I think a lot of people feel
bored at work, with or without epilepsy, my husband was in the computer
business and was made redundant in his mid 50s as he could no longer think as
quickly as the younger lot.
I quite agree with you about driving, well done for
thinking this way, I would have thought now you have had four years without a
seizure you could try and put the condition behind your mind, forget about what
the others think, you are the same as them now, lucky you!
Sludge
In my family it really isn't a problem. My situation is a rather complex situation, given I come from a single parent family where some of the older sibblings knew both parents. One family member is jealous of the attention that I received as a person with epilepsy and refuses to contact our father. This family member has also shown jealousy when other younger family members introduced their new spouses. And each time we meet, there seems to be a look of ire when I assert myself and show them how much I have developed, sociologically and psychologically, since acheiving seizure free status. They seem to give the impression that they expect me to be the younger sibbling who they once condescended on to cover their weaknesses. But I speak assertively and they back down, begrudgingly. There are long spans of time between our meetings and phone communications. And the fact that I have kept touch with other family members has made me more respected than the member who has decided to give us the "code of silence"(no pun intended). Our lives go on and mine continues to improve.
Morning.
Dad, fine. Grandmother, fine. Sister, hardly speak to but she's fine. Mother. Really not fine, oh no, not fine at all. I have no idea why this is, other than that she was reasonable before I started seeing the neurologist. She doesn't want to speak to me, when I call (for they NEVER call) its "I'll get your Dad."
Maybe she thinks I'm possessed. She is a devout Catholic, like.
I'm in England, by the way. Hope any of that rambling helps.
All the best,
Overproof.
I am sorry to hear your are having trouble with your mother. What have you done to try and sort this out?
I too am in England so it will be one of the Conferences here, I am so eager to bring this subject up. Are you a member of any of the two websites in England?
sludge
To be fair, we don't exactly have the 'nuclear family.' This just seems to be the end of the road for my mother and I.
Nah, mate, I'm not a member of the other websites. I don't even know what they are. Dunno if you can link them, but is there a PM facility?
All the best,
Overproof.
P C Holman
Sorry, I've been this long, I'm surprised your GP hasn't given you the name of the Association for Epilepsy website.
The one in London is called,
'The National Society of Epilepsy'
The one in Leeds is called,
'Epilepsy Action'
Sludge
I was diagnosed with epilepsy in 2003, but it was suggested I've had it for almost a decade. My older brothers and I don't talk at all now and my older sister refers to me as the odd one or a little different. It hurts, but then you realize they don't understand it and are probably afraid of it. My younger siblings think I'm different in a cool way and my parents understand I can't help having E or it's side effects.
My in-laws are from a different culture and they don't understand either. They think E is a disease of the mental being as well as the physical. Many people in their area of the world think that people with E are possesed by the devil. They do not prescribe to that belief, but they think of me as being constantly ill when many times the E and the medicine just makes me tired. They definitly have more compassion than the other part of my family.
hi,
What you say must be so hurtful, you can't let this carry on or it will affect you physiologically, say to them do they really want one of their own family getting worse because of their misunderstanding. Or mention this to your GP and ask him if he would have a word with your siblings? Or explain to your mother the frustration that you are going through with this condition so it is very hurtful that the rest of the family think of their own sibling in such a hurtful way. I could write something for you to make them read if you like? Whatever you do, please don't let this carry on amongst the family. Unfortunately the conferences have finished for this year but the next big one I want to bring this subject up
Which country do you live in as we have such a supporting lot in our forum who will give you a lot of advise?
Sludge (Cath)
I was diagnosed with epilepsy in 2004, and I know I have had this since 1990 when I was a teenager, the symptoms were all there. My mom was diligently trying back then to figure out why I would always pass out onto the floor. Now that I have a diagnosis, I have told my mom, she says "that explains a lot". I told my husband, and he is fine. But thats all I feel comfortable in telling. I'm afraid to tell anyone else, I dont feel I should tell anyone else. No one needs to know that I have epilepsy, no one seems to understand it anyways, and people who dont understand it seem to look down upon those who have it. So I'm not telling anyone out of fear of rejection.
P C Holman
If you are contented there is no need to tell others unless they ask, after all people don't go around mentioning other conditions unless they are asked so you are correct, why should we unless it is for employment or whatever.
Sludge (Cath)