I just sent this letter to my current coordinator at John Hopkins Medical, International Patient Services, Ms. Maria Katerina Sakaria. It's an appeal to have JHM reconsider their approach to my case, in light of the post-traumatic stress disorder I have suffered from six years of Dutch medical healthcare. What I desire is to have JHM treat me like a human being who has gone through Hell and back and not just a number.
Dear Ms. Sakaria,
I'm writing this appeal to beg you and John Hopkins Medical to please reconsider the approach taken towards my case. Reason for this is yesterday's appointment confirmation which was provided and stated in such a way that it managed to severely trigger my medical post-traumatic stress disorder.
Back in early 2005 I first realized what was wrong with my body, finding out that I am intersexual. At first I was relieved, because I thought that soon my life would start making sense. Fast-forward 2.5 years, spent at the VU Medical Center in Amsterdam as well as an half year at some psychologist, and filled with doctors and psychologists trying to convince me that I had to be transsexual, while refusing to perform any examinations or tests.
On December 21st, 2007 a German private clinic concluded based on an MRI scan that I am a hermaphrodite, which was a big relief to me, as now I finally knew how my body is put together. Or so I thought, as the Dutch medical specialists refused to accept this diagnosis, instead telling me that there was nothing special visible on the MRI. Two more Dutch MRIs were made, once by accident, once at my request at a Dutch private clinic. I have heard various interpretations from Dutch radiologists on what the black tube visible on each scan might be, from air in the rectum, to air next to the rectum, to simple dismissal.
For the past six years now I have been invited to one appointment with medical specialists after another, each of them disappointing. None of them giving me answers. I have had to beg to have a second tissue tested with a mosaic test. No one wanted to look at the structure which can be felt underneath the skin at the location of where a vagina would be. Every single clinical symptom regarding the (probably female) prostate have been ignored. The fact that I have a completely female skeleton and build was ignored. The fact that I can not get male orgasms and have never been able to ejaculate like a male has been ignored.
At no point have Dutch healthcare personnel listened to me, or been interested in solving my case. This has resulted in me suffering severe PTSD, primarily from the way the Dutch healthcare personnel have treated me, but worsened by having been raped and sexually assaulted a few years ago. I have received no help or treatment with this. There are self-help groups for rape victims, but my case is far more complex than theirs. I, and friends for me, have contacted various psychologists who offer EMDR therapy to help me deal with the PTSD, but none want to take on the case as they find it's too complex.
In 2009 and early this year I have attempted suicide. Last night nearly became my third attempt as the appointment confirmation email managed to trigger my PTSD in the most horrible way possible.
The only way for me to deal with this PTSD is to get medical recognition and treatment for my intersex condition. I'm not looking to be merely seen by yet another medical specialist. I need the assurance that I will be truly helped and this medical stand-off resolved so that I can finally start building up my life. My IS condition is something which has controlled and made my life into a hell from a very early age, and only by learning what it is so that I can accept can I put that all behind me.
For this reason I beg John Hopkins to truly consider the human, personal side of my case in its handling of it. My emotional state is beyond fragile and the disappointment of yesterday's message was already nearly enough to push me over the edge.
I want to live. I want to live so dearly. There's nothing more I want more than make all my dreams about making wonderful software and hardware and robotics which will improve the lives of others a reality. What is holding me back is this PTSD and this unknown body which always gets in the way of just living.
I dislike having to ask others for help, but in this particular case I need John Hopkins Medical and all the skilled people there to help me. I do not have a lot of money, but I have friends who can give and lend me what is required for paying JHM for rendered services. All I ask from John Hopkins is to treat me like a human being which has gone through Hell and back and is merely looking for a human face on the help she receives as well as strong support to lean against after having fought for so long for a bit of attention.
I will be posting this message as an open letter on my blog as well.
Thank you for your attention.