Since when is it wrong to want to know the basic facts about one's own body? Everybody else in this world seems to know it, why am I not allowed to know? Answer me that.
It's not wrong to want to know the basic facts about your body. But it is not very functional to keep pursuing the answer in a way that keeps resulting in disappointment, getting hurt and no answer. First, let's get the sense of entitlement out of the way. Many people don't know the basic facts about their body: why are they born with a physical disfigurement or disability; do they have that pesky Huntington's or BRCA-1 gene that seems to run in the family; why did they, at a young age of 30, get terminal lung cancer despite never having smoked in their lives. Some people are lucky and (think they) know the basic facts, more or less. But that's just luck, and just because they (think that they) do doesn't mean that you get to know the basic facts about your body. Life's unfair like that. This has nothing to do with you not being "allowed". It's about what is possible. Regardless of you feeling that doctors are disinterested or just holding out on you out of spite, it really is quite possible that they simply do not have the answer you seek. It's a very new and poorly explored field. I've seen cancer patients going on an impossible quest for 'the Cure', and they all end up crazy, dead or both. You want to know what your body is so you can say to the world: "I am a woman". Do you picture that some written doctor's certificate that you have some obscure, never-heard-of Incomprehensible Latin Name Syndrome will convince some narrow-minded box-thinking bureaucrat at the passport office that your prefix should read "Ms." instead of "Mr."? Come on, girl. I'm Dutch too. I know how Dutch bureaucrats work. What you are dealing with is people's beliefs and preconceptions. Just like I cannot convince a Creationist about evolution, or someone who believes in the paranormal of the cold, hard scientific evidence that says that there are no paranormal phenomena, you will not be able to convince people what gender you are, regardless of the medical tests, the doctors' certificates or the fancy Latin syndromes, unless they are open-minded enough to know that dick != male in the first place. Only you can decide what you are. And I think you already have, but you are scared of your own sexuality so you're stalling.
Hold on a second, what are you expecting from an appointment letter? Hand-written from the medical director with some rose petals in the envelope, and hand-delivered to your door? Sorry, but appointment letters are either copy & paste jobs, completely automated from a form, or written by a harried secretary who has another 30 letters to write before lunch. You really need to manage your expectations. JHM have given you an appointment, and will see you. The letter is just that, a piece of paper that tells you where and when. It's not an indication of how the "system" will treat you, or how your doctor will treat you, it's how a hospital deals with thousands and thousands of appointments each month.
I just got a phone call from my coordinator. She had read the letter I sent, and she was very understanding. She'll ensure that if there's a cancellation my appointment will be bumped up. She also assured me that I'll be there for a full examination and everything, including surgery if necessary. A couple of points: - They'll only examine me while there's money available. The first consultation already costs me over $650 according to the form I got yesterday. Maybe I should set up a donation drive or so? - I'll have to figure out how to get an open plane ticket, or at least a convenient/cheap way to have a flexible return ticket. - I'll need to have some place to stay. Hotels are expensive. If I'm staying in the US for a day or ten as my coordinator estimated, that would be thousands of dollars just for a hotel room. --- No, I want to know my body is so that I can form a bloody self-image and put a lot of things in the right place. My coordinator apologized earlier for how she had phrased and delivered the appointment confirmation. She understood that it would upset me, which is why she called me instead of just writing an email. She put a more human face on the whole system this way, and I'm feeling much better for it.
I absolutely do not have the faintest idea of what you might mean with this. What is it exactly you are accusing me of?
Either that or take out a loan. What price happiness? Travel Agents are your friend. Perhaps a US member on this forum can offer you a place to crash? You already have a self-image. You seek validation of it. Only you can do that. I'm not accusing you (again, manage those expectations...). I'm happy to PM you if you want to talk about it, but I'm not happy to discuss it in a public forum.
It's great that JHM responded in such a way, and it's also good that it has helped you. However without your letter, they wouldn't have thought about that kind of thing - you really are another face amongst thousands to them, until you get in contact and remind them. My point is, try not to take everything personally. You may get other letters in the future that are just as impersonal, but remember that it's simply what everybody else gets sent. The personal treatment only happens with phone calls or in person.
Oh, it's not that I took it personally, it just reminded my PTSD too much of previous contacts with hospitals and went into overdrive. That's one thing which makes it so hard for me to be understood... people just don't seem to 'get' what it means to have PTSD. Veterans have that issue, but so have civilians who go through something traumatic. For me getting getting real medical help & recognition will be the best PTSD therapy, as at that point the direct cause(s) for at least my medical PTSD will have been taken away. If I give up on finding the answers and help I'd have an active PTSD which is untreatable. I have to deal with it. That it also gives me a self-image, allows me to finally explain to others what I am, takes away piles of uncertainty and gives me much more credit in the media and with politicians if I'm backed by a large hospital like JHM. A real boost, in short.
That statement is a contradiction. You experienced PTSD symptoms because you took it personally. From what I've read on your blog I don't think it is going to be as simple as that.
In a sense, I did, I guess. Nothing in life is simple. My life doesn't make one lick of sense. JHM is my last attempt at life. I'm tired of pretending I enjoy being alive, of pretending that I'm okay with existing. I hate life. I hate existing. I hate people. I hate everything. I only want to find peace. If it's not in this life, then I'll find it in death. Bye
So reading your blog I see that John Hopkins have turned you down, I thought you were just after a diagnosis so you know "who you are", I didn't realise you were after surgery to "correct" your body. I would stop with all the mentions of suicides to the hospital however, if I was a hospital on the recieving end of that I wouldn't wish to touch the case with a barge pole.
I honestly don't care any more. They seem to think that I want sex reassignment surgery while I don't. Heck, they even started about it. I just wanted to make the option of surgery possible. I doubt they'll change their minds. Tomorrow I'll be requesting euthanasia at my GP and that'll be the end of it. Screw this world and everything in it. My existence has always been a horrible mistake. Anyone who says that life is worth living for a freak like me is a horrible liar.
I wouldn't say your a freak. You're just looking for answers, like everyone else. You just happen to be asking different questions.
Well, a good friend of mine just informed me that he may have found a surgeon willing to do exploratory surgery on me, and he's in talks with two foreign clinics at the moment. I just sent him all the medical files. Seems like I might not need JHM after all. I guess that's what I really need in this all: a good friend or two doing the things for me which I would find extremely taxing
I hope that you find the answers that you're looking for. But, if you ever think the road isn't worth it, I'll remind you that others might know and can do nothing-and you're not in that situation. You've shown amazing strength to last this long, and even if you don't believe that, we all do. You get a chance for both answers and a cure. I may have my answers, but there is no escaping my fate. If you ever find yourself asking why press on, remember, you can do more than I will ever be able to. Even though you don't share my faith, I'll be praying that you can find the answers you seek. I think you won't mind, though. If you need anything, even if it's $20 to eat on when you get to the US, let me know. I'm always available to talk, even if it's just you need someone to rant at. I don't know your pains, but I do know what it's like for medicine to throw up their hands and say they can't do more.
Hmmmm I'm pretty sure I commented on this thread yet comment has now been removed with no explanation. Censorship at it's finest?
I feel the need to quote Nexxo: You have had the reports from various clinics in your country and Germany and they have told you what you are, what reason have they to lie? All the medical people in the world aren't against you but you feel that because they don't give the answer that you want that they are uncaring. For example you critisized the medical system over here because you heard from someone it can take up to a year to get an appointment, we have the NHS which is very tightly funded and they can only afford to put so many resources into very specialist sections and all departments are quite overstretched, but this doesn't mean that they don't care. They never told you that, they simply said that they thought they could not offer the surgery that you requested which might be a mistake anyway as you have pointed out, you do not want sex re-assignment surgery. Instead of waiting for a reply to your email to them you slag them off on your blog which you have linked them to in the past, they haven't told you to "**** off and die" they seem to simply be trying to save you un-needed expense, of which you have no money to speak of anyway, and have told you to get help as soon as possible with your suicidal thoughts, which i see you haven't really made an attempt to do so. I really think you do need to seek help with your ptsd and suicidal tendancies, perhaps even try to get yourself admitted to a clinic until some of the darker thoughts subside, you'll prove nothing by killing yourself. I remember that you said you have an appointment at a clinic near you somewhere in the future....august possibly? You think you have been intersex all your life, surely waiting a little bit more won't change much. I guess I'm just struggling to see exactly what you are trying to achieve with all of this.
Oh yes, them. They told me I am a hermaphrodite, transsexual, confused, transgender, suffering from autoparagynaecophilia and just plain crazy. Which one shall I pick today? Based on the stories I have heard from UK IS people, the NHS truly doesn't care. They managed to completely miss the whole bloody points in a spectacular fashion. It's just beyond comprehension that they would get it so wrong. Is it so weird that I feel majorly iffed at this? Oh yes, just like how one of the gender teams here in NL (VUMC) wanted to lock me away because they figured I was suffering from violent urges. To protect myself. All because I got angry once. I got issues at the moment because no bloody hospital has done their best to try and help me in the past 6.5 years. Slightly frustrating, maybe? Traumatizing maybe as well? August 1st I have an intake at the hospital in UZ Gent, Belgium. They expect me to request all medical files at all hospitals where I have been at my own costs, drive there, deliver those files and wait for the next appointment 1-2 months later where they may or may not look at me. No thanks. They're not interested in my case from the get-go, so I'm not going to waste my time on it. I have gone through the same thing about 5 times now with Dutch hospitals and it's one of the things which got me my PTSD. That's clear. But then again you aren't IS. You know what your body is. You aren't being discriminated against by society. You don't constantly have to explain why you're different. You didn't have to deal with doctors who couldn't care less about you when all you wanted were some simple answers to a few basic questions. How could you understand?
Exactly we cannot. I have dipped into this thread now and again and it seems in the most part that the people here are trying their best to understand but it is simply impossible to do so. Only you truly understand how you feel. One of your previous posts suggested that you are considering euthanasia, all that will achieve is that you will die not knowing who or what you are. Whilst we all have our own little problems I guess yours are somewhat greater than most I admit, but you also have to understand that to other people small even insignificant things to you could be unbearable to them. You are right when you say that we cannot understand what you feel because we are not you, yet also you are not us and we may have been through things that have made us feel the same way as you, even if those things are petty by comparison. Do any of us know who we really are? You talk about knowing your body but who really knows what lies beneath them, as Nexxo suggested. Would any of us truly want to know the absolute truth about ourselves? I am completely sympathetic to your plight and wish I had the answer for you, but I and anybody else here doesn't . All we can do is offer our support, advice and understanding. You will find the answer you are looking for eventually but it does not lie within a box.
well you seem to make up your own diagnosis regardless of what the doctors say. Going by your blog you know this from one person which cannot reflect a true picture. It's not so hard to see why the surgery you requested could have been mistaken as sex re-assignment surgery, its even possible the surgery you requested would fall under the same general category as it and they do not do surgery of this nature. The more likely explaination is that it is just a misunderstanding, possibly due to language barriers and they will clear it up in an email as to whether they can help or not. You admit you have issues and these are causing you to self harm, have suicidal tendancies and causing you to black out, perhaps an institution would be a good place to get the care that you seem to require until you can get the other medical side sorted out. How do you know they are not interested? Because you're not top of the list? Surely it would be a cheaper option than flying to america for treatment regardless. In the same line of thought, how can you understand how we feel because we can be categorized into male or female and suffer all the gender stereotypes associated with either gender? Everyone has their own demons to face, it's how we deal with them that defines us as a person, not what your body looks like. You seem unwilling to listen to reasoning or suggestions and are hell bent on your tunnel visioned view of life, what do you see at the end of it? What if the doctors tell you that you are not IS? I want you to get everything sorted and be happy, as I'm sure everyone else here does, but I feel you are just making this all very hard on yourself and digging a deep hole with all the suicide stuff that no medical professional is going to want to touch you, maybe give yourself a break from your compaign for a few months and relax a bit, its not healthy to be completely focussed on one thing and to let it rule you. I'm done with this now, sometimes you gotta know how to pick your battles, good luck.
