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Hello,
I was wondering of how does one decide that he/she is intersex. As an xxy, I can understand that being born with an intersex condition and how our bodies work, that a person diagnosed with having extra female chrmosones can identify himself as intersex.
I was curious, however, of those who are not xxy or a varient can identify themselves as intersex. How have you come to this conclusion and what lead up to the decision of becoming intersex without the chromosonal backup ?
Priestess
11-23-06, 12:16 AM
Dear Andre,
As being someone among many here who is not xxy, I should reply because if no one answers you then all there is is silence.
I can understand how being xxy you have a choice of whether to identify yourself as intersexed. With an estimated 1 in 500 male births being xxy, probably most must never know they have it, or else don't care about the extra-x. Or else there would be a vast unstoppable army of xxy's?
But while the way you identify yourself may be a choice, I think that to "become intersexed" wasn't the exact choice you made, but rather whether you should interpet your chromosonal variation as being it. For others here, it's the same choice, but different physical conditions can kind of push in the direction of intersex being undeniable, regardless of what a dna test might appear to say.
Everyone here will have their own individual story to tell. Listening brings a touch of humanity, and many narratives have been recorded. What should I say? I lived, and perceived myself as more a eunuch than even the worst case of xxy, and didn't like it. I've bled, and known pains I never knew I should be eligable for. I've found things out about my past that stole away every assumption I'd ever made about myself or my life. I've seen medical results that should not be possible for any person of either "normal" sex, and had doctors run away from their tests even while they admit that things are all the wrong shape size and position in my poor beleagured pelvis. Wrong for either sex. Did I make a choice to become intersexed? Or was it just the only label left when no other catagory would have me? My genetics haven't had any thorough or reliable test, but does that matter when nearly every lab report shows medically bizarre or at least highly unlikely test results? These are questions I can't answer, but maybe I'll find some meaning in my life eventually. I can't even go to other forums, because I don't belong in any of the major conditions that get forums founded for them. No peer group for undefined anomalies. So maybe I'm intersexed enough to be here, that depends on who you ask. Or maybe I'm a waste of time, except for some reason I write well, and sometimes I even manage to persuade my readers.
I hope that's one answer among many.
When you get other answers, from people with CAH, or AIS, that will show you their hearts, and the meanings that make up life's grand mosaic ...
maybe I'll find some meaning in my life eventually.
Everyone and I mean everyone has meaning, it is just perhaps not that apparent just yet. Every living being, from the birds straight through to the whales, have meaning. Building a site where people can gather and congregate in a common goal, building a community, takes guts and courage. It is step in a direction that you and everyone else do not know of it's outcome. It can save lives,it is that important.
From a curiosity to a seemingly simple question comes a whole world of hurt and anxiety. This, my dear, is the human frailty that binds us, makes us whole. One cannot be whole from oneself, it comes from the willingness and tribulations of making a difference, then one starts to become whole and have meaning. So what if the site is calm, so what if the only people come on here are ones of curiosity, thier lives are in other forums. If you helped the one, then you have done your purpose and you then can become whole, no matter what you portray to the rest of the world.
My question still remains for others to answer.
According to the ISNA,
" “Intersex” is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male."
It's an umbrella term. If someone feels there is something different from the 'norm' going on physically or genetically, then the term fits. Someone can't decide to "become" intersex. You simply are or aren't. Some people on this site have a diagnosis from a doctor, and some are still trying to get a diagnosis, or trying to find a doctor who will deal openly and honestly with them. Some people have strange scars that they have questions about, and some people remember having surgeries as children with only vauge explanations. Some of these people may never know for sure. Everyone has a different experience. So, having said all that, I'm not sure that I actually understand your question.
Jenny,
You answered it. You see, I have been inadated with information of intersex and how we as xxy's are. I didn't and I don't see myself as intersex but I do have an intersex condition. I present myself as male but I think and feel both. So I have to ask myself if I am fooling myself in thinking that I am in denial or is it that I just am not intersex. A little confusing for me.
Much like (no offence intended whatsoever) being gay. Some know this from the start and some discover this after an event in thier lives. I was wondering whether this was the case with me.
So, if I get this right, you know it or you don't. Well, it being that black and white I would have to go with not.
Thanks, jenny.
Priestess
11-24-06, 06:46 PM
Andre,
Xxy is kind of an exception. I'm told that not everyone gets a full blown case of Kleinfelter's syndrome. You don't have to have always known, the only promise is fertility problems. You didn't choose to have a genetic condition, but you get to choose whether to identify yourself as intersexed.
There are other IS conditions, like women with CAH for example, who are allowed to feel completely like women. That doesn't change the medical condition, but gender reversal isn't a required part of intersex.
Thank you Priestess, that eases the mind a little.
I got my answers, thanks folks. I have confirmed what I believed it to be in the first place.
Priestess
11-27-06, 10:34 PM
Thank you Priestess, that eases the mind a little.
I got my answers, thanks folks. I have confirmed what I believed it to be in the first place.
Aww :osigh: If I wasn't able to challenge your beliefs, I'll feel like I failed. I visited the website you show in your profile, though I wasn't able to learn too much due to most of the forums being members only. It seems like most support orgs are exclusive like that. Where as I'm just an anomaly who doesn't fit any particular condition closely enough.
Now, now, I am sure there are plenty of things we can bantor about. I do enjoy a good exchange of beliefs, it opens my horizons a little more. If you were on the site, you would have seen that I get into many a subject.
Now about the intersex belief that I hold so dear, I hear about it so often that the subject is getting rather tedious. Why do I come here you ask ? It's for the different point of views, which I get here.
Educate me.
Priestess
11-27-06, 11:19 PM
Actually, I'm not so sure what your beliefs are, only that they were confirmed. Maybe I'm not so good at being educational either ? But at least I can fail gracefully. What would you like to learn about? Maybe I can point you towards people who really know something, it's the wisdom of the ages ...
Well, where do I start ?
Perhaps, I could start with you :
I would like to know what truly intersexed people think of others, what realtionships they would like to have, besides seeing the world as a hostile place, what else do they like about the world around them. I would like to know if they are angry with whatever higher power they believe in or are they grateful. What do they see as a positive in thier lives.
And, what is it about xxy's that they would like to know. Anything, I am open.
I'm not so sure what your beliefs are, only that they were confirmed.
My belief is, seeing that I have a choice, I choose to present myself as male and allow myself to think and feel both male and female, for whatever part comes out in whatever situation. I am comfortable in this respect.
I wasn't able to learn too much due to most of the forums being members only.
There is really only one that is private, and there we tend to get personal there. It's more for the security of those who feel that they cannot share thier xxyness with any other who are not. Please do not feel excluded, it is meant as nothing towards you personally.
Priestess
11-28-06, 04:59 PM
Well, where do I start ?
Perhaps, I could start with you :
I would like to know what truly intersexed people think of others, what realtionships they would like to have, besides seeing the world as a hostile place, what else do they like about the world around them. I would like to know if they are angry with whatever higher power they believe in or are they grateful. What do they see as a positive in thier lives.
Ooh, I'm truly intersexed :) That's a change in my status around here. I can answer for myself, but I know for sure that the other people here would have very different replies for you.
The short answer is, I don't blame goddess for my unusual birth. I blame the doctors who thought they were god, and my parents who believed they were doing the will of god. There's a long answer too, but it might be construed as an unacceptable rant against organized religion.
I don't have an opinion of others that encompasses all other people. I tend to not catagorize people either, I usually judge others on an individual basis.
I have been horrified by recent politics, and my optimistic wishes for human nature have been disappointed by how easy it is to tell seemingly rational beings that they need to hate others. But that's a delicate subject, best to avoid.
What I'd like in the world is to emmigrate to Australia, and spend the rest of my days on the holiday coast. Set up a shop someplace and let america go crazy without me. And find love ... without affection and the companionship of kindred spirits, there's hardly anything worth doing in life, is there?
As to what sort of relationships that would be, there are fascinating people who I occasionally meet, and which sex they are is the least thing I'm concerned with. Perhaps it's just a sign of how undersexed my heredity has left me, but I feel as though I really am attracted to the spirits I sense within these mortal shells.
What I find as a positive in life, is that my chance for a future hasn't been completely snuffed out yet, though hope has burnt awefully low at the moment.
And, what is it about xxy's that they would like to know. Anything, I am open.
I once met an xxy individual "Z", who judging by an old picture appeared to have been an ordinary average guy, who described themself as having been married but without kids yet not especially unhappy. But after a chromosone test, their marriage fell apart and Z apparently decided that the extra-x was a sign that it was his natural destiny to be a she. And Z switched sexual orientation too and found herself a boyfriend.
I soo do not understand what Z was thinking. Though Canice has said she considers that the extra-x makes her third-gendered. Is this a common reaction when xxy's find out later in life?
My belief is, seeing that I have a choice, I choose to present myself as male and allow myself to think and feel both male and female, for whatever part comes out in whatever situation. I am comfortable in this respect.
I've noticed that a lot of people perceive thoughts and feelings as coming in "male" and "female" varieties. I guess I never really understood that. It seems easy to say there are socially approved stereotypes for what each gender is supposed to think and feel.But how much of social behavior is people buying into an image, and how much is the stereotype being there because many people's behaviors are often stereotypical?
There is really only one that is private, and there we tend to get personal there. It's more for the security of those who feel that they cannot share thier xxyness with any other who are not. Please do not feel excluded, it is meant as nothing towards you personally.
I guess it's probably a good idea to have one forum section like that. At least you have some topics viewable. I don't feel excluded by you, as conditions go xxy probably has no direct relevance to me. The trouble is with other conditions that my symptoms resemble somewhat, but not close enough. Some support orgs tend to want a diagnosis as the entrance requirement for viewing any of their resources, at others you pretty much have to prove your interest is legitimate enough before anyone will respond to you.
You didn't choose to have a genetic condition, but you get to choose whether to identify yourself as intersexed.
Isn't this true for all people with intersex conditions as you know,the identities of intersex people vary from male to female to anything in between. Sex,gender and identity are different things and while some prefer to identify as “intersex” most are happy with “female” or “male” and use the related pronouns.
prince....ss?
11-28-06, 07:16 PM
Funny, I don’t identify as female, this is what the public identifies me as being. So I just answer to what ever pronouns are used. It’s just easier! I don’t foresee anything in my future where my sex, gender or identity has any relevance. I can’t have children and I will NEVER, EVER get married again, so just call me what you will. I know what I am and that is all that counts.
Priestess
11-28-06, 08:44 PM
Isn't this true for all people with intersex conditions as you know,the identities of intersex people vary from male to female to anything in between. Sex,gender and identity are different things and while some prefer to identify as “intersex” most are happy with “female” or “male” and use the related pronouns.
Hi Canice,
I know, it's just that Andre seemed to start out the thread with the idea that those without xxy were choosing to "become intersexed", which seemed a little bit wrong somehow. So I was just trying to clarify the assumption.
I was curious, however, of those who are not xxy or a varient can identify themselves as intersex. How have you come to this conclusion and what lead up to the decision of becoming intersex without the chromosonal backup ?
Priestess, thank you for being candid, it is most appreciated. Some people tend to snuff at newbies asking seemingly stupid questions, you indeed are patient and teach very well.
Though Canice has said she considers that the extra-x makes her third-gendered. Is this a common reaction when xxy's find out later in life?
It's common amongst xxy's being diagnosed at a later time that they are
1) shocked
2) dismayed
3) xx what???
4) f-f-f-female ? you mean in me ?
5) inter what now ?
6) oh that's why this and that happened
7) Oh I am not alone but do I want to share ?
As far as the reaction to this person is concerned, well, I have seen reactions go different ways. Some are relieved that there is an excuse for thier thoughts of same sex attractions, some are afraid of it and go to the extreme, and some want to learn before making any decisions. In all three points, there are at least 5 more to mention, you get general idea ?
This, of course, is the way I see it, it does not necessarily describe anyone reading this.
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I've noticed that a lot of people perceive thoughts and feelings as coming in "male" and "female" varieties.
Are there other ways of describing it ?
Priestess
11-28-06, 10:44 PM
Priestess, thank you for being candid, it is most appreciated. Some people tend to snuff at newbies asking seemingly stupid questions, you indeed are patient and teach very well.
Oh, you're welcome. And your questions haven't been stupid, you seem quite intelligent and you're familiar with xxy, which is a subject here. So even though everyone has to be new to a forum sometime, it's not as though you should be considered terribly newbie. Though I almost forgot your welcome sign :sign16: those have been somewhat traditional.
Is this a common reaction when xxy's find out later in life?
It's common amongst xxy's being diagnosed at a later time that they are
1) shocked
2) dismayed
3) xx what???
4) f-f-f-female ? you mean in me ?
5) inter what now ?
6) oh that's why this and that happened
7) Oh I am not alone but do I want to share ?
It does sound almost like finding out is worse than living through it. I can empathize. Even though I always had a lot of discernable physical problems, nothing ever prepared me for when I started finding out pieces of the real truth.
As far as the reaction to this person is concerned, well, I have seen reactions go different ways. Some are relieved that there is an excuse for thier thoughts of same sex attractions, some are afraid of it and go to the extreme, and some want to learn before making any decisions. In all three points, there are at least 5 more to mention, you get general idea ?
Yes, there's plenty of opportunity for free will. One thing though, since you've decided I'm a good teacher :angel_smi as far as word choice goes, "an excuse for" often sounds accusatory, as if there were some blame attached. And readers might judge your posts based on tone and nuance before they decide that your intended meaning was harmless. You might find that here there are a fair number of people who are quite open with regards to same sex feelings. And in some cases it's not so easy to define "same sex" in the first place.
I've noticed that a lot of people perceive thoughts and feelings as coming in "male" and "female" varieties.
Are there other ways of describing it ?
Well, when someone finds the courage for something you could say they are being a man or they "have balls" etc. Or you could just say they had courage, and not attach a gender to it. After all, there are times when women must find inner strength, but don't stop being women because of it. The devil's dictionary might show an image of womanhood being weak and demure, but that doesn't make it true. Consider the pioneer women of the old west, and how were they any different in nature from a self-sufficient woman of today?
Or if someone has sensitivity and empathy for others, a lot of people might label that as feminine, or it could just be what it is. After all, it's a human quality that males possess as well, and they're still men. The stereotypes would attach blame to them for being a sissy, but what if the images are all lies, distortions and charicatures of humanity?
I'm wouldn't tell you that I was right. My perceptions of the world are different from most people's. But that's what I meant , not understanding.
Without sounding harsh, I never really know what to say when it comes to same sex issues and topics. It always comes out that I have offended someone without intention. Instead of tip toing around the subects, I just say it and hope for the best. I usually bumble my way through it and somehow come out a little wiser in the end.
So, please don't take this personally, I just don't know any better.
Kailana
12-04-06, 05:05 PM
Andre i am very happy to have read through your posts. initially i was sort of confused. not really understanding whether you were wanting to know what it means to be intersexed? or more importantly, what it means if you or me of us, considers ourselves intersexed rather then as a man or as a woman. I found a little more clarification as i read through each of the posts. I greatly admire your convictions. To be what you are and happy. I happen to xy/xo and yes am or was at one time labelled intersexed by medical professionals. I think really though that for me, calling myself an intersexual rather than a man, or a woman is my way of finding my own strengths and my own courage. Often i felt as though i really wasnt anything, not really a man and not really a woman. That could be why i am the way i am, open intersexed individual. I am happy to be a little of both. That society still only sees male and female is kinda a shame in my opinion. A great many of us are a little of this and a little of that. Does it really matter all that much if someone considers themselves intersexed? rather then as a man or as a woman. From my experience and my own anatomy i have some parts that are male, some parts that are almost male, some parts that are female, and some that are almost female. For years i have thought that my problems really stemmed from the almost belief of what i am. Being almost or thinking of oneself as almost male, or almost female, well that is very trying. in the end i have found my own place. With support from so many others here and some family and most of my friends i have found myself. Sometimes Just wondering what each of us is, is enough to really screw with our minds. happy, happy, happy, that is really all of us really need to be.
thanks again for starting this thread, i really did enjoy everyones thoughts on the subject. And Great meating you Andre. take care all
Kailana;
Thanks for responding. You are the first I've met that is xy/xo. May I ask you some questions ? I mean nothing of it, again, I just don't know. I want to find out more so that I can respond to the next without talking out of my butt.
How did you find out about being xy/xo? What exactly is xo ? When you look in the mirror, do you like what you see ? How do you relate to others ? Whom are you attracted to ? What is your criteria for a good partner ?
See, people are people no matter where you go. It's the one that acts differently that I question why. I don't say that you are, I am a curious creature that likes to know people, all kinds. I am the guy who , in a party situation, will leave and know just about everyone. I am also the guy that introduces a shy one and speaks of her/his forte's in order for she/he to be welcomed by the group. In order for me to do this, I have to know a little bit about most things, not a lot about a little.
Just to let you know where I am coming from.
I was curious, however, of those who are not xxy or a varient can identify themselves as intersex. How have you come to this conclusion and what lead up to the decision of becoming intersex without the chromosonal backup ?
Hi Andre,
I have met many intersex people who are XX or XY and are intersex. This includes intersex conditions like 5ARD, CAH, AIS, PAIS. Also, intersex people have been around for thousands of years before it was discovered in the late 1950’s that XX is generally female and XY is generally male. I knew that I was intersex before the medical profession knew about XX and XY sex chromosomes. I never decided to become intersex, but grew up knowing that I was born with ambiguous genitals from about the age of six. I was about nine years old when my father first told me about my infant genital surgery. Also, I am a little confused about what you mean by the "decision of becoming intersex" unless you are indirectly referring to the decision of my parents to have sex and conceive me :-).
Peter
Peter, you do have the chomosonal or physical backup, that I understand. My question was pertaining to individuals that call themselves intesex without having any of the physical features which is described in this site.
As far as choosing, you have to realise that I came here without a clue and I certainly did not want to offend anyone here, more to the point I wanted to learn. That is what you are all doing, teaching me. It was stated that being xxy, I had a choice, I originally came here to debate that choice so that I could make a decision, which I did.
What's the point ? The more people know the more understanding there is and the better relationships between different people develop. We all want to belong, as I do. I'm a dreamer but more importantly, I am a realist. To put the two together means that I realistically dream that there will come a time where people will have more understanding for eachother. To do this, we have to learn about eachother and that is what I am doing. I do not come here to judge, that's not my place nor my interest.
I moderate a site that includes many different types of people. How am I to discuss with that person if I don't have a starting point ? There comes a time where I have to say that I need more information from the people themselves, sure I could look it up but there is no human contact so I consider that cold and inaccurate.
Again, I reiterate, if there is anything y'all want to know about xxy and it's varients, please do not hesitate to ask me no matter how uncomfortable it may seem. If I personally don't know the answer to that question, I will find out ans realy it to you. I would like to teach you too.
prince....ss?
12-05-06, 08:34 AM
Hi Andre,
I knew that I was intersex before the medical profession knew about XX and XY sex chromosomes.
Peter
Ok Peter please clarify this statement. How old are you? Chromosomes were observed in plant cells in 1842 then in animals in cells in 1882. So I don’t understand this statement or yours.
By the way did you get my PM?
Priestess
12-05-06, 09:16 AM
Ok Peter please clarify this statement. How old are you? Chromosomes were observed in plant cells in 1842 then in animals in cells in 1882. So I don’t understand this statement or yours.
By the way did you get my PM?
Your mentioning this prompted me to try looking up the history of genetics.
Mendel discovered heredity in 1866, but Watson & Crick are listed as discovering DNA in the 1950's. DNA was first isolated in the test tube in 1957. The fact that XXY involved two X's and a Y was discovered the same year. Before that it was just a mysterious syndrome.
DNA sequencing was invented by someone named Sanger in 1963, and the actual genetic code discovered in 1966. Maybe you or I or Peter could have had our chromosones tested, but it was pretty unlikely.
prince....ss?
12-05-06, 10:43 AM
Well what I know for sure is that on 4/13/1962 they performed a chromosome study on me and found me to be 46xy normal male. And with this information they still reassigned me to female. I did not think that Peter was much older than my self or when the chromosome xx and xy were discovered. So this is why I asked the question.
Andre,
I don’t remember if I ever welcomed you here at BLO. I must say that I love your attitude and I hope some folks here can learn by your example. The xxytalk is a great forum and I can see the positive influence you make. I will make the same offer to you anything you want to know just ask. I’m so open it could border “TMI”(too much information) I still don’t know enough about being xxy to ask any comprehensive question but I will get there.
Ok now about the T. This is all just one huge experiment for me I don’t have a clew what I’m doing. So this is my perspective. I am 44 years old and falling apart fast. This was the reason I requested my medical records 2 years ago…Ok then hermaphrodite thing threw me for a while and my health concerns got sidelined for a while. But now I’m back to health issues. I fear that the path I was on would make me a disabled and crippled person by the age of 50. This is a scary thought. I need to fix my bones regain my muscle strength and regain some of my mental strength. The other thing I need is to loose the chronic fatigue. So this is my goal.
The E I know has the ability to help with a host of things besides the bone loss. But I know it won’t work for the strength or energy. I asked my endo doc about antibiotic steroids and he gave me a look, not a good one. He did recommend trying a quarter tablet of T and warned me about the possible added hair growth. So in two months I will try that for a while if the E is not the fix-all.
So nothing is set in stone and I’m trying options and testing for results. So if the T has negative effects I will stop. But if I don’t try something I may as well quit. And quitting is not an option.
Prince..ss?
First of all, could I call you another name, perhaps a more personal one ? Thank you for the welcome, I have been very well received here and I appreciate the openess that people have shown. That, to me, is a compliment. I think I have made quite clear of what my intentions are, so if there are any further questions pertaining to that matter, please make it known. I am talking to all who read this thread. I intend to post here often and frequently so there will be pently of opportunity. One thing that I do ask, is that if there is anything that I am mis informed of, please correct me. In all likleyhood, I will be teaching another, it's best that I know the correct version before I prolipherate the incorrect.
As far as T is concerned, I would suggest you see what E would do before you experiment with T. I am not a Doctor nor do I have any medical license whatsoever, so this is my opinion only and in no means should you take my word as gospel. Do what you feel is right, afterall, it is yourself you have to live with.
In reading some of the threads that have been since expired (why would you expire a thread ?), I have noticed a lot of despair in amongst some of you. I would like to help out, if I can, in seeing things a little different. In the forum where I post most often, I see a lot of members there actually contemplating self abuse of any type, ending thier lives or going through a deep depression that seems hard to come out of. Some of these tend to blame others or other things for thier condition or thier state of mind.
We (you) are pioneers in what society thinks as apart. Think of others who have challenged society's views of conditions that were unacceptable and what do we think of it now ? Take Diabetes, Blindness, limbless, Autism, baldness and many, many more that I did not mention. All major and minor issues that were large 100 or so years ago. Now we see them as part of our being a society.
Being pioneers, we go through the pains of making people aware. In doing so, we create tolerance and with it understanding and with that acceptance. All matters go through that process, it's out of our hands.
We are clearing the path for the next generation to follow and continue.
Comments ?
Sunshine1
12-05-06, 12:46 PM
I don't write much anymore but I was wondering is that why we see the world as a hostile place? People talks with me in the real worls and for the most part tell me I'm the nicest person or you don't look intersex ..you're like me and for the most part I feel like a troll.
I have new GP that I like a lot who who waited after the first visit when I told him about my gyno cancer waited after a hospital visit when I was really sick with a virus to then tell me that 'the clitorectomy and all that isn't freaky and I have other patients that have freakier conditions but yours isn't freaky but it's interesting ..." He is a good doctor, I'm not going anywhere and he is mindful that I can die from lack of cortisol but the fact that the first thing in his mind was to bring up "it's not freaky but interesting" and I do believe he was trying to be comforting but to have him bring up the words your condition isn't freaky when I've never mentioned th word freaky just makes me depending on the day A.Sigh B.realize that I can accomplish what I want C. do myself in. He also turned pink when he was checking my lungs.
A freak of nature or just someone with a boring Adrenal Gland Condition.
I meet someone with your condition at my Endos office and he was the nicest funniest guy in the world. Nobody would know that he had any type of condition.
Aimee
Aimee;
I would love to tell you that Doctors get into the profession because they care. Maybe that's what made them study medicine in the first place but somewhere down the line they lose it. Rather, talk to a nurse, they care a heck of a lot more and they are sworn to protect the patient's best interest. They are the only ones that can override a doctor should a doctor fail to see something.
Being human, we are freaks of nature. We have evolved way past anything that has been borne by Nature, therefore making us freaks. Within a group of people, we are overlooked because we don't fit the average person. So is it all a farce ? Definately and don't let anyone convince you otherwise.
What's the secret to that person being very funny even though his condition may be at it's worst ? His outlook in life.
Having a comical approach to whatever is bad or uncomfortable brings confidence, trust, caring and an ability to overcome the worst. What you don't see is the frustration, the anger, the crying, the hurt, all things that let out a powerful emotion that kept inside, would create more havoc than the original diagnoses.
Outlet is important. It shows courage and vulnerability. All things that make us who we are. It is also a good trait to be assertive. This controlled emotion will get you to a place that you would like to be. Anger does the opposite, know the difference. If the Doctor does or says something that makes you uncomfortable, say so. If he/she is making assumptions, say so.
We are not victims of another, rather victims of ourselves. Don't be a victim, speak up. Tell them that this and that is what you expect for the good money that you are spending. Another little known secret, Doctor's work for you. You hire them by going to them, you can fire them as well.
Wow, I've rambled on, haven't I ? I hope that it helped you a little, Aimee.
prince....ss?
12-05-06, 01:19 PM
One of the things I have noticed and perhaps don’t understand. If you were born xxy, who do you have to point the finger at and assign blame for the condition? Other than the general society who has wronged you? So yes I can imagine being xxy has a boat load of symptoms that make life difficult but that is the hand that was dealt. It is something you need to learn to live with.
Now as for myself and some of the others here, we were also dealt a crappy hand. But then there are the doctors interventions and the shame and lies forced upon us. So if I were inclined to post blame I could give you names and dates. Although I hope I have a good grip on my condition I still find things that anger me.
I recently had an open discussion with my cousin. And trough this talk I discovered that she was made aware of my true condition long ago. So it brings up the whole issue and anger that I was not told of my condition but other members were fully aware. Sorry but I think that is messed up.
So I was not allowed to learn to live with it. I was not given the rules to the game and every time I looked at my crappy hand it changed or the rules changed to suit my hand. That is, I have never been given the opportunity to win. So I can understand the Blame Game but I just don’t want to play.
Andre said;
“We (you) are pioneers in what society thinks as apart. Think of others who have challenged society's views of conditions that were unacceptable and what do we think of it now ? Take Diabetes, Blindness, limbless, Autism, baldness and many, many more that I did not mention. All major and minor issues that were large 100 or so years ago. Now we see them as part of our being a society.”
I like your point but I don’t agree with your examples. I don’t know if anyone has been attacked , beaten or killed for being a diabetic or being bald. Perhaps things like being black in America, or being homosexual and now the new kid on the block being transsexual are making forward motions in society. Perhaps we are also getting there but it is still a dangerous world out there.
Sunshine1
12-05-06, 01:22 PM
I've had worse experinces with nurses although they like doctors didn't intend it to be for example the nurse that went "ambiguous genitals look weird ..."
That Doc? i really think he was trying to be helpful in his own way and it was a concern as to why he turned pink the one time in the hospital when he was checking my lungs
Princess;
All good points.
Let me start by saying that I love being Mosaic xxy. I love it because I get to see other points my xy compatriots don't see, and I get to express myself in ways that would be false for the same xy's. I learned to love it, as I had a hard time in my younger years. So, having said that, I imagine you are asking about others who do not see my point of view. Fair enough.
To answer your question, let me ask you this : When you go out and meet others, are you free to say what your condition is ? Do you tell others ? No ? Why not ? Fear of what ? It is that of which I speak when I talk about the world being against people like us.
As to the examples, how do you know that no on hasebeen physically or mentally beat because it thier condition ? Blind people were surpressed and institutionalised, and they created brail despite been beaten. Diabetics just simply died, (autistic)* people were in institutions as well, except in China, where they were reveared as a good omen by Kings of the time.
That answer your question ?
*(oops, it wasn't autism, it was epilepsy and Samolia, sorry)
Priestess
12-05-06, 01:57 PM
I have noticed a lot of despair in amongst some of you. I would like to help out, if I can, in seeing things a little different.
Hi Andre,
I guess I've been a major source for posts of despair around here. Umm, sorry about that. You can try helping me see things differently, though I'd probably be a challenge. I expect that the only person who's likely to cheer me up would be a doctor who's about to perform medical treatment. Most of my problems exist separately from social acceptance, except for the social acceptance of the docs who withhold treatment.
I recently had an open discussion with my cousin. And trough this talk I discovered that she was made aware of my true condition long ago.
I so agree with what you posted, princess.
And Andre, me too. I've been told recently that everyone in my extended family knew something about the circumstances of my birth, except for my younger sister. And I spent my entire childhood being mistreated by them as a punishment for imperfection(s) I was never told about.
Hi Andre,
And Andre, me too. I've been told recently that everyone in my extended family knew something about the circumstances of my birth, except for my younger sister. And I spent my entire childhood being mistreated by them as a punishment for imperfection(s) I was never told about.
My experience of what ISNA calls the concealment model of intersex medical treatment has been ongoing. For instance, in the early 1960's when I was twelve, I underwent blood tests and psychological tests to assess my condition. The doctors said nothing to me about what was going on. I assume that the blood tests were chromosome tests, but to this day my father refuses to tell me my karyotype. The only comment my mother would make at the time, was that the blood tests were more important than the psychological tests, but she would not elaborate. I am angry about all the shame and secrecy involved in this. And then there was my little bother telling other kids in school that I was different, but my parents refused to discuss the issue. So, I too know what it is like to be one of the few members of my family for whom the truth is off-limits.
Peter
I am angry about all the shame and secrecy involved in this. And then there was my little bother telling other kids in school that I was different, but my parents refused to discuss the issue.
Imagine the pain your parents' went through, it's not like they were happy about it. They just didn't know how to deal with it, nothing in thier experience prepared them for this, you have to understand.
If you are talking early 60's, then your parent were approx 25 yrs old ? Thier parent heard nothing of it so they couldn't prepare your parents for this kind of eventuality.
I know my parents blamed themselves for me being xxy, thinking they had something to do with it.
Our parents' came from the time where nothing unusual was discussed, even today, my wife's family refuses to speak of the medical history.
Have your parents' apologised to you ?
Priestess
12-05-06, 05:33 PM
Our parents' came from the time where nothing unusual was discussed, even today, my wife's family refuses to speak of the medical history.
How does that explain telling everyone except the child who it reasonably matters to the most?
Onnineko
12-05-06, 06:17 PM
The E I know has the ability to help with a host of things besides the bone loss. But I know it won’t work for the strength or energy. I asked my endo doc about antibiotic steroids and he gave me a look, not a good one. He did recommend trying a quarter tablet of T and warned me about the possible added hair growth. So in two months I will try that for a while if the E is not the fix-all.
Hmm thats an easy one.
Step 1) Get Primary Sex Hormone over the minimum. Estrogen 100/705 pg/ml and Testosterone (we think..) 170-250/1100 ng/ml.
Step 2) Get some exercise. Think 6 hours a week, and work up to 12.
Step 3) Get a good diet, think polynesian or vegietarian with fish. Lots of nuts, veggies, fish, whole grains, and really light on the fats, sugar and bread.
Give that 6 months, and re-evaluate.
How does that explain telling everyone except the child who it reasonably matters to the most?
That was obviously wrong. I am not making excuses for parents and thier mistakes, I merely felt it was fair to see the other side as well. It's part of the healing process, forgive what has been done to you, forgive yourself.
prince....ss?
12-05-06, 08:50 PM
Onnineko,
Step one) inprogress!!!
Step two) more then covered, I build houses for a living.
Step three) covered except the bread and sugar thing, I just made Oatmeal cookies!!!
Gee I hope I see improvement within 6 months
Thanks
Andre,
I don’t think you realize the depth the lies and deception can take. It goes beyond wrong and enters hurtful. These conditions are not easy on anyone but we have the right to know.
When I was 20 ish I was married to a nice man, he understood that I was not able to have children. My mother was trying to get my two normal sisters to donate me some eggs so that I could have children. She was most supportive of this idea. ( that is messed up) So at 42 I get my medical records and one day I confronted her about the truth. With medical records in hand she still denied knowledge of my real condition. So this stuff goes real deep with parents. Up to that point my mother and I could talk about anything except that.
The doctor that did my infant surgery did not understand why it was important for me to know about my condition. In his eyes he created a perfect functional but not fertile woman.
I am very fortunate and all the lies are exposed for me. I have the report (Medical records) I took statements and I have pictures. So my healing is well on its way.
Unfortunately, many others here are not so lucky, records are lost and no one will talk, doctors won’t help so healing is not so easy.
Princess;
I am in no way trying to down grade the hurt and pain that comes from deceit, that is real. I have a few stories of my own, but mostly from people who just didn't know any better.
They say that the road to hell is paved with good intentions, they weren't kidding. It seems that those who kept secrets are the sames ones that claim to love us and were trying to protect us. It was wrong, no doubt.
I know all to well that it's not an easy thing to forget nevermind forgive but the forgiving part can be done, if you want to. It helps to move on.
Priestess
12-06-06, 10:13 AM
Princess;
It seems that those who kept secrets are the sames ones that claim to love us and were trying to protect us. It was wrong, no doubt.
I know all to well that it's not an easy thing to forget nevermind forgive but the forgiving part can be done, if you want to. It helps to move on.
I think one point princess made is that the lies are ongoing. She had medical records in her hand detailing what her parents consented to, and still her mom won't admit it.
I've had a similar experience with my mother. I have a small collection of papers etc from my infancy, all in my mother's own handwriting, which she gave to me two years ago. A lot of it seems slightly weird, but especially a birthday card with a female varient of my supposed original name on it.
When I asked her about it, at first she said she couldn't read what it said. So I scanned it and made a giant blown-up print. It looks clear enough. My own mother said it was a lie and accused me of forging it. I took it to handwriting expert though, and they said it's her writing.
The lies didn't end in our childhoods, they continue into the present. It may be possible to forgive past injustices. But forgiving new ones in progress seems like consenting to the wrongs.
So what do you want to do ? Keep on fighting a never ending point ? Move away and hope it all blows over ? Keep in mind that those who accuse and lie in deceit are still human with all thier frailties and shortcomings.
I made it a point to say STOP, NO MORE. And I went on with my life. Okay, it wasn't that easy, this went on for the rest of my life from 17 yrs, I am 44. My sisters haven't dealt with it, they moved away. I live in Quebec, Canada, they moved to Vancouver, Canada and they still have issues. My sisters are 9 years and 13 years older than I. I feel sorry for them and that is where it ends. They don't have a relationship with thier (my) Dad and blame him for all kinds of things. They have embellished a bit, because memory does that as you get older.
Actually they have issues with most guys, which of course makes me feel a little left out but to hell with it. I realised the only family I will ever belong to would be the one I make myself. And I have. A far cry from me looking for a family that will love me unconditionally that many years ago. Instead, I am making my world right by loving my daughter and my wife unconditionally. And being honest with both of them.
What's been done to me, I vow not to do it for another and so far it has worked. Venting is good, venting without a plan as to how to make it right for ourselves, is self defeating.
prince....ss?
12-06-06, 11:43 AM
I agree with you and you make some excellent points. For the most part I have done the same and went on with my life. I have my faults and I am still hung up on a few things but time will work them out.
I don’t know about the rest of you but for me TRUST is the most important thing to me in any relationship. By saying relationship this includes family, friends, persons you do business with and basically any person I come into contact with. So everyone is given a certain amount of trust and that amount of trust can grow. But for me if I get lied to or wronged just once that’s it. I don’t trust them and I hate to say but they will never gain that trust back. I may forgive but I never forget. I have found that most people that lie and do things of mistrust continue with that behavior. So once a liar always a liar!!!
Keep in mind the folks here that are searching for answers about themselves and have parents and doctors lying to them and withholding information, it is not something you can just say Stop, No more to. It is not something you can just move on from. This is important information that you need to survive.
Think of it as sitting in the middle of the ocean on a raft with ores. You have no food and little water. If you say Stop, no more to this situation and just start rowing, well I hope you see my point. But if you had one piece of information, say a compass, your chances for survival have increased. If you had a GPS device and a map even better.
So I agree with you and hopefully one day we will all find our way home. But if you don’t know which way to row you may never find your way.
Priestess
12-06-06, 11:49 AM
I'm sure princess's answer might be different, but ...
The truth is the truth, and has a slowly growing body of medical evidence to back it up. I may not challenge them on the points very often, but it will never be dropped from my side. That would be like agreeing to "the moon is just the sun at night ...".
I'm not looking for unconditional love from my birth family. I already knew that they never loved me. Now I know it was because in their eyes I had been born a freak of nature, and surgery only disguised it. The lies were not to protect me, but to protect themselves from being blamed for what they did. And they don't want my love or ask for forgiveness.
The lies were not to protect me, but to protect themselves from being blamed for what they did. And they don't want my love or ask for forgiveness.
Then give to someone more deserving. Eventually, you will be faced with this again if you don't resolve it within yourself.
I wish you all the courage and energy I can muster. I truly wish you well. I wish there was more I can say or do, it's hard when my words are on the opposite side looking in. I can only point you in the right direction, you have to do the walking yourself, sweety. I am always around if you want to lean and I offer this without judgment and without conditions.
Andre
After a brief thought and reflection on how I am answering you folks, I have come to realise that it may seem that what I say is the only way. It is not. These are merely suggestions, how you go about resolving issues and problems is completely up to you.
All I want to do is give you another opinion, one from the outside, if you will. My blended personality sees no boundaries and no walls that cannot be conquered. I see a goal and I get it, nothing but the advice from my wife will stop me. I am in a better place but it took work, a heck of a lot of it and it's not finished. I guess I'll stop when my body gives out.
I really feel for the lot of you. I have physical problems of my own (who doesn't) and being xxy gives me some problems all xy's can't even fathom. I wouldn't want to take it back, I am okay with it. I just want the best for all that I meet, I mean no harm.
prince....ss?
12-06-06, 01:10 PM
Your thoughts and suggestions are great and we appreciate them greatly. My comments are just an explanation of one side of this hexagon. So your suggestions and comments give us an opportunity to look closer at the problem. By examining the problem then you can start to find solutions. Unfortunately, not all problems are fixable. So I hope you don’t feel like we were ganging up on you. This is just a difficult reality that some of us have to deal with, and the one barrier between us and wellness.
The good news is this conversation will run and rerun in our minds and perhaps one comment , thought or perception will be a directional marker to where we want and need to go.
So I hope you don’t feel like we were ganging up on you. This is just a difficult reality that some of us have to deal with, and the one barrier between us and wellness.
Princess,
I don't feel like you folks are ganging up on me, I don't feel that way at all. What you said about some problems having no fix to them is completely true. These are difficult realities to believe in never mind live them.
Thanks for your support, princess. I just had a thought that here I am going like gang busters when the reality is that it starts slow. It takes 21 days to create a habit, that much time to replace one as well.
I tell you this because I went through some tough times in regards to that, without saying more, anger management has taught me a lot about myself and other issues. Some I am still working on, like I said earlier.
Priestess
12-06-06, 02:03 PM
Andre, I'm sorry also, for being aggravating.
Yes, sometimes these can be hard realities to believe in. I used to be somewhat skeptical myself, it's something for me to ashamed of that haven't always taken people here at their word, only to find a history of myself which is so unlikely that 5 years ago I wouldn't have believed someone who said it. I think this is a result of the general atmosphere of secrecy, that we don't believe just how aweful the truth can be.
Andre, I'm sorry also, for being aggravating.
You weren't, just untrusting. That's okay, just last week you didn't know me from a hole in the wall. All I had going for me was a site that I moderate and Princess backing me up.
I talk like this to everyone, but I especially want to help where there is hurt. I hurt too, where mine has gone for the most part, there is still some left.
Princess hit it bang on, TRUST. I normally trust people right off but I do so with some reservations and caution. I am expecting others to fail me, when it happens, I am slightly disappointed, if it doesn't then it's a welcoming surprise.
Hang in there, Priestess, there are some here that are rooting for you and actually in your corner. Count me in as one.
I like this site. People here are different and I truly like different. Most give me another perspective and I am always learning. Here I can be myself, as I am in the other site. No one will judge me here of being too girly or too masculine, I really don't see that happening.
So while I spread myself out on this comfy couch, I would like to say that I admire all of you for your courage in posting here and your compassion for others. I still have a lot of reading to do and I'll take my time.
Earl Grey please, with two lumps, thankyou.
Priestess
12-07-06, 09:04 AM
I like this site. People here are different and I truly like different. Most give me another perspective and I am always learning. Here I can be myself, as I am in the other site. No one will judge me here of being too girly or too masculine, I really don't see that happening.
So while I spread myself out on this comfy couch, I would like to say that I admire all of you for your courage in posting here and your compassion for others. I still have a lot of reading to do and I'll take my time.
Earl Grey please, with two lumps, thankyou.
Oooh compliments, and we didn't even have to go fishing for them :happy68: Well, we have been pushed into experiencing life from uncommon points of view.
Onnineko
12-07-06, 12:38 PM
Has it occurred to you that your parents made a really horrible mistake. And they're trying hard not to shatter their own lives and admit this? Their crime is only worse that they didn't face it 20-30...50 years ago. Instead of pushing them to admit failure, this gross and utter failure, perhaps try to console them. Tell them you really want to know and that its okay (of course its not okay..), but finding a way to talk to someone that regards this as an abominable action will release their debt as well as your own.
Onnineko
12-07-06, 12:46 PM
Onnineko,
Step one) inprogress!!!
Step two) more then covered, I build houses for a living.
Step three) covered except the bread and sugar thing, I just made Oatmeal cookies!!!
Gee I hope I see improvement within 6 months
Thanks
One last thought is that you may want to get your testosterone level over 2% of scale. Example: scale of 0-1100 ng/ml, 22/1100 ng/ml is 2%. Women can lose libido and have fatigue if under that level. I recently discovered by inadvertant test that I react the same. :roll:
But you don't want the testosterone level very high, certainly not over 6% of scale. And female norm is 2-4% of scale. Especially if you are taking estrogen at a moderate to high level. Since the combination of too high testosterone and high estrogen (girls)... or too high estrogen and high testosterone (boys) is one of the primary causes (or symtpoms that prompt additional cause) in cancers. The jury is out on whether its a primary cause, or a symptom and additional cause.
Priestess
12-07-06, 03:01 PM
Has it occurred to you that your parents made a really horrible mistake. And they're trying hard not to shatter their own lives and admit this? Their crime is only worse that they didn't face it 20-30...50 years ago. Instead of pushing them to admit failure, this gross and utter failure, perhaps try to console them. Tell them you really want to know and that its okay (of course its not okay..), but finding a way to talk to someone that regards this as an abominable action will release their debt as well as your own.
I'm not sure if you were replying to me?
I've tried talking to my mother on the subject. The furthest I've gotten was her "theoretical" explanation for why parents might have done something like this, while denying that she would ever do anything like that. My father is dead. He always made comments implying that I was freak, though he never explained, leaving me feeling guilty thinking it was something I had control over. I've gotten more information out of other relatives, but when my grandmother found out they were telling me anything, everyone on her side of the family turned silent.
My mother's explanation of theoretically-why eats at my feelings. Having a choice of what sex their hermaphrodite child should be, they decided based on the chauvinistic ideas of gender roles common in pre women's lib times. Except the old days started ending when I was still a child. A woman's place being married and hopefully pregnant, and they weren't given any reason to think I might have actual female reproductive function.
And though she wouldn't say it, when surgery came, I suspect it was partially to protect me from my father's inclinations, so I couldn't be violated. Though that suspicion depends on vague memory flashes and some not so reliable comments.
Onnineko
12-07-06, 07:39 PM
Hmm thats an easy one.
Step 1) Get Primary Sex Hormone over the minimum. Estrogen 100/705 pg/ml and Testosterone (we think..) 170-250/1100 ng/ml.
I should be more careful. That is Estrogen OR Testosterone. Certainly don't try to get both of the so called 'sex hormones' up there. Just one.
Onnineko
12-07-06, 07:58 PM
Perhaps .. :)
If she admits that theoretically something might have happened, is it possible .. like my mother .. she forgets? At the time, the Doctors would have been encouraging the operations. Taking the "best" advice only to find that it wasn't. Thats a hard decision to make. Suppose you had a daughter. And she has a malignant tumor in her side. The doctors offer you their "refined opinion" other wise known as a best guess, "You should operate and remove the tumor. The collateral damage won't be significant. And otherwise she might die." Oh god.. what do you do? Operate? Don't operate and hope for the best? How many questions and what kind would you ask? Would you even understand their answers?
What to do. I don't know. There probably isn't time for me to learn what I need to know to estimate the same guess. I would probably say yes, operate. Well that was 30 years ago. Now this young lady is asking me why she doesn't walk straight like everyone else. She thinks it might have been an operation of some kind back when she was a child. New medical knowledge shows that the tumor wasn't malignant, and that the operation didn't need to be done. You want me to look this girl in the eyes and apologise? Please just shoot me, the pain is too much.
Sometimes its best to let sleeping dragons lie. FYI .. if you are in tears its okay.. that just an "example." Excuse me a moment.. /sniff.
And though she wouldn't say it, when surgery came, I suspect it was partially to protect me from my father's inclinations, so I couldn't be violated. Though that suspicion depends on vague memory flashes and some not so reliable comments.
I'd have to go with the idea that she made a mistake. She knows it was a mistake. And to talk to you about it is very painful.
How to mend that fence? There is no good reason to go through the rest of what life you have feeling animosity. And it does little or no good to dig up the past in a case like this. But you can't let it go... Perhaps you'll find a way out of this place, and let me know. :)
:ARMS1:
Priestess
12-07-06, 08:20 PM
Hi Onnineko,
I hope my post didn't dredge up any painful memories for you?
Finding out all these things hasn't left me with more long-term animosity than I started out with. Over all the years, I had a broken relationship with my birth family but never knew why. I always tried, and then when things never worked out I felt guilty as though maybe I hadn't been good enough.
I'm not sure if it's the knowing or the sickness, but all I'm left with is a blurry feeling in my heart, as though all the memories in my soul are evaporating.
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