Educating the doctors of tomorrow.

March 28, 2010 at 7:27 pm (Just wondering...)

I recently went for my physical and was given the opportunity to speak to a up-and-coming doctor about my experience with MRKH. My regular doctor (who is wonderful by the way) is very much aware of my aim in creating this blog and my goal to empower MRKH women through education, so she asked me if I was comfortable talking to her intern. It was interesting because I was excited but also a little unsure how to approach the situation. Anyways, after shaking hands with him (yes, him) and formal introductions, I told him the basics which went something like this: “My name is so-and-so and I was diagnosed with MRKH at 15.” Before I assumed that he knew what this all meant, I asked him if he was familiar with the condition. He mumbled “yes” and flipped through my file (avoiding eye contact), clearly uncomfortable with the situation. I found this to be interesting. Was it up to me to put him at ease? Who was the professional here? I asked him if there was anything in particular he wanted to know about MRKH or my experience with it. I followed up with a comment about how difficult it can be for a young girl to realize that she is not like most girls. He nervously nodded, smiled and continued to flip through my file, mumbling something about needing to see more. In other words, he seemed completely uninterested in how you deal psychologically with MRKH. I thought it interesting and decided not to pursue it further. So I waited as he shifted papers and continued to avoid eye contact. I could not help but wonder that if knowing what he did, did he see me as different or abnormal? It is funny how after all this time, this thought continues to pop into my head. After waiting patiently for some curiousity to peak his interest, I was grossly disappointed when he finally came out with: “I see you have had a few UTI’s (urinary tract infections) in the past, have you had any recently?” He continued to ask me questions about my urinary output. I just thought: Typical, it is all about the body. The few routine questions he had to ask he asked and seeming satisfied, he got up (without inviting me to ask questions or say anymore) and said nonchalantly, “Well, thank you for sharing,” as if I was a six year old at show-and-tell. This may seem a little bit harsh* but I had hoped that a future doctor would have some interest in how he/she would go about delivering the diagnosis to new patients or what aspects to address when diagnosing or what is most comforting to someone who has been diagnosed (etc.). No such luck. Perhaps, I should have been more forthcoming in telling my story but I think when you get the feeling someone is just not interested then you tend to back off a bit.

I guess my point in sharing this experience was to say that not only do we, as MRKH women, need to be educated but I also think the physicians of tomorrow (and today for that matter!) need to be educated in how to diagnose congenital anomalies. The experience is uncomfortable as it is, without having someone in the room be unsympathetic. We are people too. Maybe this is something that the medical community should try and keep in mind when dealing with sensitive issues such as this?

*(Please note that I am not trying to attack anyone. I am simply stating an opinion!)

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TV Opportunity: Good idea or bad idea????

March 25, 2010 at 12:39 pm (Documentaries, Just wondering...)

I recently saw a post on the mrkh-grrls group which made me question how we approach MRKH awareness. Im also curious about your thoughts. Below is the post that I encountered:

Hi all,
I haven’t written in much since my mom died awhile back, but want to pas
this on if you’re interested.
Personally, I have my doubts that we will be portrayed in a respectful way,
but I’m forwarding their last (of many) emails to me so you can decide for
yourselves. Contact them if you wish. They want women 18-28. They
initially requested women who “can’t have sex” . I don’t do interviewers
with folks who presume that vaginal penetration is what sex is about but
that doesn’t mean you can’t. Here’s their contact info…..Have fun.

Hi,

Thank you for getting back to me so quickly. I apologize if the description
in my email implied that all women with MRKH are unable to have sex (which I
am quite aware is not the case). The point of our documentary is to shed
light on the subject of sexual dysfunction in general (a very serious topic
that affects many people). We have already been contacted by many young
women with MRKH who have given a self-description of having difficulty
having sex, and therefore, we thought contacting MRKH.org might we a good
way to find more of these stories.

Again, I’m very sorry if I gave the wrong impression about our documentary
in any way, and we would love to hear your input on the subject.

Thank you again for your time,

Hagan Hinshaw
Punched in the Head Productions
Hagan@punchedintheh ead.com

My feeling is that given that it is MTV that it could be a good way  to reach many young women who may have not been diagnosed or who have been diagnosed but have not encountered others with MRKH (ie thereby combatting those feelings of isolation). On the other hand, I am also skeptical about how we would be portrayed. Given that the focus would be for entertainment value, I worry that their ignorance about MRKH may only serve to misinform others and portray us in a negative way. I hope that it is okay that I have shared this post with others!

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Always learning.

March 24, 2010 at 8:38 pm (Just wondering...)

I’ve learnt something new today about MRKH. I learned that there is a whole controversy between whether MRKH is considered to be an intersex condition or whether it is not. Out of eagerness for clarification, I emailed my doctor and asked her explicitly. She told me it was not and that it was a congenital anomaly. I also recieved feedback from others who stated it was not. I was ignorant of the controversy that surrounded this topic but have now learned that while some do not consider themselves to be intersex, others do. I guess the mixed messages within the research should’ve been an indication. My one question is: how does one decide to label themselves as one thing or the other? (ie. how do those who identify themselves as intersex, decide that they are intersex?). I think this is really interesting since I have known about my condition for about seven years now and was as of yet completely oblivious of this hot topic! Just a thought.

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Labels.

March 20, 2010 at 5:15 pm (Just wondering...)

This is a random tangent that I’ve encountered as I reflect on MRKH and what it means to us. My story will continue.

Labels. They help define us. They can be positive or negative. On the one hand, people can judge us by them. On the other, if we are told something is wrong but science cannot tell us what, we feel alone. Freakish. I’ve been thinking a lot about whether the human need to categorize helps or harms those of us who are diagnosed with similar conditions. Is it because we are raised to fear ambiguity? Do we feel relief when we are labelled? Because it may mean we have a treatment or some way of recognizing or identifying ourselves. For those women who spent years oblivious of this label, was is harder for you? Was it easier for us who were labelled? Or do labels just make us all the more “different”? It’s a chromosomal anomaly. Out of our control! Think about it.

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