Parts Unknown

Severe pain in my 17 year-old son’s abdomen brought us to the ER last week.  One of those situations everyone dreads, but if you are transgender there can be an added level of anxiety when the medical professionals you are dealing with aren’t current on trans healthcare. Such was the case for us, beginning at the reception desk.

“Name and date-of-birth,” the harried man says through what looks to be bulletproof glass.

Providing the information requested, I nervously wait for what is coming next.  Predictably his brow begins to furrow as he stares at his computer.  Without looking I know what is causing the confusion.  On his screen is Sam’s pre-transition female name because we had been in this particular ER years ago and that information remained in their database.

“Samuel?” he asks in a perplexed tone.

I hold my breath as flashbacks of this same scenario begin playing in my head…at the orthodontist, school, bank, library, community center — basically any institution, organization or business that had Sam’s birth name, Samantha, in their computer system before it was legally changed to Samuel.

My first instinct is to lie if he asks whether Sam has a twin sister named Samantha, which is usually the conclusion people reach to explain why they have an obviously male bodied person in front of them but a female name listed in their database with the same address and birthdate.  A white lie in this instance seems justifiable and easier than telling a total stranger that Sam is transgender, then waiting for the uncomfortable silence that ensues as the person processes what I have said — outing him to not only this person, but also to the people in line behind us, who usually then begin to stare and whisper.  It’s happened too many times to count and today I would give anything to avoid the situation.

He continues to study Sam, then his computer screen, and then Sam again.  As if admitting defeat, he shrugs his shoulders, pounds out what seems to be a novel on his keyboard and tells us to take a seat.  I breathe a sigh of relief knowing this could have easily gone the other way, as it has so often in the past.

Next up is the triage nurse.  A woman wearing white orthopedic shoes, which seem premature given her young age, who ushers us into a small sterile room to take Sam’s vitals and discuss his symptoms.  Protocol dictates that she also determines what, if any, current medications he is on, which we openly share.

“Testosterone?” she repeats in the form of a question.  “Why are you taking that?”

Sam’s tired eyes anxiously dart in my direction, signaling that he would like me to answer this question on his behalf and so I explain, “Sam is transgender.”

“Ohhhhhh,” she replies unfazed, which actually makes me feel better because I assume she is familiar with the term.  That assumption, however, is quickly thwarted by her next query.  Gazing at her computer screen searching for an appropriate code for this piece of information she asks, “Would that be the same thing as  t-r-a-n-s-s- e-x-u-a-l-i-s-m?

In awe of her ability to simultaneously elongate and slaughter the word, I say, “Sure,” trying to put an end to this line of questions for Sam as quickly as possible.

As if on cue, George, the burly ER nurse assigned to Sam appears, his mere presence saving us from the awkwardness of the moment.  A regular Superman in scrubs, George shows us to an ER bay and immediately goes about his usual routine.  Getting Sam settled on a hospital bed he gently asks, “Have you ever had any surgeries buddy?”

Sam’s eyes fixate on me, the telepathy between us stronger than ever, and so I answer for him by saying, “Double Mastectomy.”

George glances at me looking slightly perturbed and says, “I’m not asking about your medical history mam, I’m asking if your son has had any surgeries.”  Now most people at this point might be horrified, but we learned a long time ago that being able to laugh is a trait that will get you a lot farther in these types of situations.  And so I let out a little chuckle and say, “Yes, I know, I am answering for him.  Sam is transgender.”

Just as I am making a mental note to purchase a better bra given the fact George obviously thinks I have had a double mastectomy, the ER doctor announces his arrival by sliding the privacy curtain aside. I assume someone along the way must have brought him up-to-speed, but unfortunately I am wrong. The doctor begins to examine Sam’s abdomen during which time the fact comes up that Sam is transgender.  With that revelation, he quickly removes his hands from Sam’s body, as if he has received an electric shock.  Looking completely surprised, he admits out loud, “I’m not up-to-speed on those issues – do you still get a period?”

We might have been able to laugh at this question too if it wasn’t so humiliating.  There was no bigotry or maliciousness in the question, but that didn’t make it any less difficult to hear.  Deep down we knew the doctor’s intentions were good, but his bedside manner left much to be desired.  Knowing this question hurt Sam’s psyche just as much as the physical pain searing through his stomach, I jumped in to provide a quick Transgender 101 overview on his anatomy and medical history.

Following emergency surgery to remove his appendix, we faced another educational moment when the night nurse handed Sam a portable plastic urinal.  Staring at the container I thought Sam might start to cry and so I assured her I would help him to the bathroom.  Once he was situated I rejoined her in the room and asked if she knew Sam was transgender.  Just a year out of nursing school, her immaturity showed as she released a nervous giggle and said, “Yes, but I didn’t know if that meant he had…” Implementing a rudimentary form of sign language, she waved her hand in front of her crotch to finish her sentence.

We entered parts unknown that night when we checked into the ER, and to our surprise, some of Sam’s medical staff were along for the ride.  While Sam had someone who could advocate for him and speak on his behalf, many transgender people do not, which makes them even more vulnerable when seeking medical attention. We share this experience not to shame, but to shed light on the fact that education and training are still greatly needed to ensure trans patients receive the same respect and level of care as everyone else.

Post note:  To learn more about healthcare facilities throughout our nation that have adopted policies for LGBT equity and inclusion, check out the Human Rights Campaign’s annual Healthcare Equality Index. 

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9 Responses to Parts Unknown

  1. Sara says:

    Oy vey! What an experience! It sounds like there was an absence of malice, but a ton of ignorance and insensitivity. I’m so sorry that you and Sam had to deal with that ever, much less during what was already such a stressful situation.

  2. Emily says:

    What a harrowing experience to go through – especially while Sam was in pain.

    I dread this sort of event. I have a four and a half year old MtF daughter and she recently had some issues with her pen!s. I think she had the beginnings of a UTI which thankfully cleared on its own before I had to take her to urgent care. I was really worried about how it would be handled.

    It sounds like you did a great job advocating for your son; I just wish you didn’t have to – the medical profession needs to be better informed.

  3. Grace says:

    I’m sorry to hear that. The questions seem innocent, but it can be frustrating answering them over and over again.

    I’m glad to hear your son is ok – and I hope in the future people won’t be as… well… you know.
    I think you did a terrific job advocating for you son and you sound like an amazing parent. Keep up the awesome blogging!

  4. stinger839 says:

    I am FtM transsex and I have had many worse experiences, two involving abdominal pain and ER visits. Your kid is very lucky to have mastectomy provided to him; this will be of tremendous benefit. You must realize that your son was their education in this matter; otherwise search Polly “understanding the transsexual patient culturally”. For your son’s mental health, I do not advise he reads his medical record; most states you cannot correct the misgenderings (inaccuracies on the record) just file with OCR though you don’t sound discriminated against, just socially maligned less severely than I was. My experience has been they knew they could not overtly discriminate so they casually, legally did; resultantly I’ve had to lie about pain and circumstances to receive treatment. It is a complex legal and emotional game but thankfully small steps like updating SS and passport info and the Mia Macy ruling are happening. I advise you fund whatever surgeries your kid needs and then he omits this from his medical history unless he knows for certain it is the root problem (in which case, see a specialist). I understand that this will be increasingly impossible as centralized cloud databases of our healthcare records (I think EPIC will have this feature) become the norm. All people are biased (countless studies show) and they will malign you if they other you in any way. Your son’s is also not the first story of transmale medical discrimination, Robert Eads being the most famous (watch Southern Comfort). #transdocfail also trended in the UK for a bit, peaking the nation for a day or so; of course they actually provide service for their trans people, U.S. prefers us to die on the streets. I’m new to your blog (HuffPo) and insanely envious of your son’s generation as just a half generation after mine, the care and social acceptance are so much better. I of course now take my scrap of credit. So many blazed trails and did not need to tweet about it, just continued to the next burden of a moment.

  5. Eve says:

    I found your blog a few days ago and found that this piece has stayed in my mind as I’ve gone about my day. As a mother and a doctor I can see myself on both sides of the bedside and was nodding about many of the comments. I was surprised not to see many of them still here. I felt that some of the comments were pretty harsh, but others had valid points.

    As a mother who went through appendicitis with her child I can certainly understand the instinct to protect your son. I want to protect my teens as well. But, as a doctor it seems like you made healthcare workers seem stupid for not knowing information they have no way of knowing.

    I found myself wondering how I would have death with being your sons physician. I would have been thrown off by your answering the question about surgery for him as I expect my teen patients to answer for themselves. A little red flag goes up when parents answer for teens- I find myself wondering what I’m not being told. And the doctor’s reaction to finding out about Sam’s transgenderness was horrible. But, of course, transgender people can be at many points in transition. So, the info about having female internal organs is essential for diagnosis. I’d have asked for it too.

    It sounds like the medical staff were uncomfortable with Sam and pretty un knowledgeable. That’s hard, and I’m sure it wasn’t what you needed In a stressful time. I’m so sorry you had to go through that on top of worrying about him in surgery. I can imagine that having to explain Transgender 101 all the time must be exhausting. I read through your posts and have a lot of respect for how you’ve dealt with an unexpected situation in such a wonderful and brave way. That goes for you, Sam and the rest of your family.

    Whatever else you take from this experience, remember that health care workers are human and need education just like everyone else. And healthcare is one place where biological gender can still trump all other expressions of gender. Precisely because a persons outward gender may not match his or her internal biology, open discussion is essential. Although this should be the responsibility of the provider, I always remind my patients that they have the most at stake and benefit most from the understanding and they sometimes have to insist on it.

    • Leslie says:

      Hi Eve,

      Thanks for taking the time to respond to my blog post, Parts Unknown. I appreciate hearing your insight as a doctor and fellow mom. Without (hopefully) sounding defensive, I wanted to address some points you made in the hopes of painting a clearer picture of our experience in the ER and hospital. Before I begin, I just wanted to clarify that the reader comments you thought were gone are still alive and well and can be found following my story on The Huffington Post, however you came through my blog to leave your message and the only comments here are those that came from people responding via my Transparenthood site.

      My frustration and disappointment with the care we received centered on what appeared to be a lack of communication and understanding. Reviewing Sam’s medical history with the triage nurse I was surprised that we had to repeat it again for the ER nurse – my assumption was – especially because being transgender is fairly unique – that detail would have been passed on but it was not, which caused the first confusion regarding who had had a double mastectomy. Clearing that up, I once again assumed that information would be shared with the ER doctor before he met Sam, but that was not the case, and so a third time we reiterated that Sam was transgender. I understand why the first person we told might have been caught off guard, however for the next two medical professionals to also be visibly surprised was frustrating and could have been avoided with some simple communication between care team members.

      Regarding me answering for Sam I offer the following –a lot of people like Sam enter every new situation (such as going to an ER) wondering if they are going to be met with acceptance, disdain, or worse. Every new situation they hope for the best but prepare for the worst because quite frankly, they have been on the receiving end of it all when people find out they are transgender. Sam did not know the medical staff and therefore had no idea how they would react to him stating he has had a double mastectomy because he is transgender. If you read the comments that followed my article you probably saw some that said we allowed him to ‘mutilate’ his body with this procedure. Not knowing what bias’ the nurses and doctors might hold, he was scared and looked to me for help. If Sam was a ‘typical’ 17 year-old then I can understand the comments made that he should be able to answer for himself. But given the fact that he is transgender, and has endured more teasing, whispers and stares, and insensitive remarks than anyone should have to in a lifetime, well, as his mom I was in the position that night to alleviate some mental stress I knew he was enduring in addition to his physical pain by answering some questions and so I did.

      We took no issue with the doctor asking about Sam’s period – it was the way that it came out that felt humiliating. It is hard to recreate the tone of a dialogue, and as I have found after my essay was featured on The Huffington Post, people read what they want to anyway depending on their perspective so often times it feels like a futile attempt trying to recreate the feeling of these types of encounters. Once we figured out that Sam’s medical history was not shared from one medical team member to the next, we reviewed everything about his history and anatomy – ovaries, uterus and all – with each subsequent person that saw Sam that night – a fact I wish I had mentioned in my original post so that perhaps I wouldn’t have been so lambasted and accused of withholding information. :) Having worked with endocrinologists, internists, pediatricians and psychologists since Sam was 8 to help him transition we have a lot of practice and know the importance of open discussions to his overall health.

      The medical care Sam received for his physical well-being that night was fine and at no point was I outraged, as some readers implied – but I would offer that with training and education, people who are transgender will someday be able to receive care that doesn’t hurt their psyche in the process, which in many cases is fragile to begin with.

      Again, I am grateful for you taking the time to not only read but also think about my essay – that was the intent of sharing our story – so that nurses, doctors and really any professional who interacts with patients will have a better understanding of people who are transgender, so that they can receive the same level of care and respect as everyone else.

      My best to you Eve!

  6. Jay says:

    Oh, how I wish I had someone like you at my medical appointments! As a 20-year-old transguy who is typically read as a butch lesbian still, I desperately miss being young enough to drag my mother along and make her explain things for me (granted, I was also closeted and living as a girl still, but the nostalgia remains). I think the first moment I felt the impact of being an adult was when I turned to give her that same look that Sam gave you and realized that I was at my appointment alone now.
    I just had two appointments with an endo for PCOS, and she was ridiculously inconsiderate about the whole trans* thing. Thanks to the PCOS, I have naturally high T levels and no periods; the endo refused for a solid 5 minutes to believe that I wasn’t secretly on some T shot or natural homeo hormones or something and we ended up getting into a fight in her damn office because she refused to believe that I was, in fact, telling her the truth. I get the fact that health care providers are human, but, as people in a position of power, they have a responsibility to be educated. As a sign language interpreter, it would be like me going to my job and not understanding that my Deaf client can’t magically read lips or speak.

  7. David André says:

    So sad to hear that Sam had to go through such ignorance on top of the pain! I recently had to have knee surgery following a skateboard injury, and I’m now almost ashamed to say that my own experience was so much better than Sam’s.
    Just like with Sam, the hospital had my pre-transition name registered to my Personal Identification Number, but the nurse didn’t need any more explanation than me having changed my name. The doctor who admitted me also didn’t pursue it when I told him I didn’t want to take my shirt off because I was FtM. And overall, I was treated just like any other boy.
    It hurts me to know that not all my trans brothers (and sisters) are as lucky as I am. And I continue to pray that things will change. Either way, good luck Sam, and I hope things go better next time you have to go to hospital!

  8. scarto says:

    Hello! I work for a Hospital and I am apauled everytime I hear a co-worker complain about dealing with transgender population or gay patients, and its not just the lower working class, nurses themselves are ignorant of such important issues. I have requested from my manager to send medical staff to classes, and to educate staff on these important issues. Our job as medical professionals, its our job to take care of all patients that need medical care, not just the stereo type population. Medical world is evolving and people will have access to more advance technologies to take care of themselves.

    I feel sad that so many are still ignorant and while are being professional about it, you can see their uneasiness to have to care for a different person.

    I am lucky that our company is willing to look and provide classes or management classes to better all of our patients.

    I never hezitated to take on any type of medical care for anyone, but having to be the advocate for my husband, I know what you mean that your son is lucky to have someone advocate for him.
    Another issue that we have experienced, was the one of the primary care doctors, was not familiar with transgender population, and my husband was directed to a doctor that manly that is what she does. And I comend her for that and I think she is an awesome doctor, but how sad that the first one, even though she tried, was unable to provide what my husband needed.

    Thank you for your blog! I am looking forward to December 8!

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