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“hi, how do you handle being intersex when you go to the doctor? my primary care doctor knows that I’m intersex, but I never know if I should talk about it if I have to go to the school nurse, the ER, or see a specialist. do I have to tell them? does it matter if I don’t? thx”

-Question submitted by Anonymous

Claudia Astorino Says:

Awww, booooo, Anonymous—having to go to the doctor’s is never fun, but having additional needs on top of your medical needs isn’t always intuitive to navigate. When I’ve chosen to disclose aspects of my body that aren’t normative for women—or even to say that I’m intersex—I’ve had results that range from really positive to really awful (like, eat the whole pint of Ben & Jerry’s awful #chubbyhubbyforevs). Based on these various experiences, I’ve created a few rules for myself that tend to end up making my visits a bit more pleasant.

1) I only disclose information about my body that is (I think is likely to be) medically necessary. So like, if I have a sore throat and go to the doctor’s, it’s probbbbbbably highly unlikely that my XY chromosomes are the reason I’m hacking up a lung. If the reason I’m getting medical care CLEARLY has nothing to do with my being intersex, I don’t mention it.

Now, I’ve put “I think is likely to be” in this rule as a reminder that if I think that my being intersex might be relevant to my medical care, then it may be worth bringing up to my doctor.  For instance, if my doctor may say something to the effect of, “Well, [health concern] is highly uncommon in women,” I may say, “Well, that may still be worth exploring since I’m not a biologically typical female. I’m an intersex person, and my form of intersex is complete androgen insensitivity. Is [health concern] likely to impact me?”

2) If doctors ask questions about my body that are medically relevant, I answer them (although I don’t have to give them all the details). I had an appendicitis scare, and the doctors performed an MRI of my lower abdomen to see if my appendix was inflamed. After doing this, one of the ER nurses said that she’d observed that I didn’t have a uterus, and asked me why.  I said, “I was born without a uterus.” In similar instances, I might follow up with, “I didn’t have a hysterectomy or other procedure you might want to be aware of.” These medical professionals are likely making sure that they’re ruling out any possible reasons why I may be having a set of symptoms, and answering these questions helps them to do that. However, I’m not obligated to provide further details. Read on, intrepid Anonymous!

3) If doctors ask questions about my body that are NOT medically relevant, I’m not obligated to answer. So. The thing is, doctors are people. And we people are living at a time in history where intersex people aren’t highly visible or well-understood. Many people don’t know what it means to be an intersex person, and sometimes these people wear white coats and stethoscopes and hold medical degrees. Sometimes, it is clear that medical professionals are asking questions about your body that aren’t medically relevant, and you might feel really uncomfortable with this. Well, Anonymous, I’m here to say it loud and clear: YOU DON’T HAVE TO ANSWER THOSE QUESTIONS, AT ALL, EVER

Let’s go back to that appendicitis scare I had. After I stated that I was born without a uterus the attending nurse asked me, “Um, why is that?” Hopefully, this nurse was trying to ask me if there was other medically relevant information she should know about. In response to situations like this, it’s perfectly acceptable to say, “That isn’t medically relevant in this case,” and state that I haven’t had a hysterectomy or other procedure they might want to know about, as suggested above. Another way to respond to questions like this is by asking another question: “Is that medically relevant?” or “Can you tell me how that’s medically relevant?” and wait for a response.

What doctors need to know is information that is medically relevant. That I’m intersex and my form of intersex is complete androgen insensitivity and I have XY chromosomes and I was born with testes and blah blah blurgh blah is usually not medically relevant information. Under those circumstances, I don’t need to report this info. If I feel comfortable providing this information, I can choose to do so, but I’m not required to.

Occasionally, you may have an encounter that makes it clear that doctors are asking questions about your body out of curiosity, and that’s not appropriate or okay. You are visiting them to stop hacking up your lungs or prevent appendageddon—not to teach them about intersex people.

Let me tell you a story.  Several years ago, after I moved to NYC, I went to try and find a doctor to serve as my primary care physician. During my first appointment with a physician we shall refer to only as Dr. Doodoopoobutt, I was asked why I took a daily estrogen pill. Since Dr. DDPB was going to be my GP, I came out to them as intersex, and told them my form of intersex. Dr. DDPB responded by asking a series of inappropriate questions, including, “So, um, do you have a penis? Oh. *pause* So you have a vagina, then? Uh, what do you and don’t you have?” Later, when I was lying on the exam table, I was terrified that Dr. DDPB was going to try to insist I should pull down my pants so they could inspect my genitals.

Today, if this situation had happened, I would have the confidence to say, “Those questions aren’t medically relevant. Can we move on?” or perhaps to say, “Those questions are medically irrelevant and they’re insensitive. I’m going to leave now,” and walk out the door and buy a hot chocolate and sit on a bench in Central Park and watch the squirrels stealing soft pretzels right out of the garbage cans, because eff that noise you know? But at the time, I didn’t know these options were open to me. Dear Anonymous, know that if any medical professional acts in a manner that’s inappropriate or disrespectful, you don’t have to sit in that plastic patient’s chair and try to deal. You are fully within your right to let them know it’s not okay, to leave, to go get that hot chocolate.

4) If doctors ask questions about my body that are NOT medically relevant, I reserve the right to lie about it.

Yep, you read that correctly, Anonymous. Real talk:  I may choose not to be truthful in answering questions about my body related to my intersex if I know it’s not medically relevant—and especially if I don’t feel comfortable with a particular healthcare provider. I have mixed feelings about this—I want to be clear about the fact that, in general, I don’t advocate lying to health care providers, and that coming out to medical professionals can be a positive experience. That being said, you are not required to come out. It can be painful when clinicians are less-than-sensitive about my body after coming out to them as intersex. I’ve dealt with a lot of damaging words and procedures from various doctors at multiple medical facilities during my childhood and adolescence—I value myself and my emotional health too much to put myself in a similar position again as an adult.

In what situations might one lie? There are often standard questions you’re asked to fill out on medical forms or asked by clinicians that you can’t answer truthfully without coming out and having a conversation about it afterward. For example, I’ve never gotten my period, but I’ve never had a medical appointment where I didn’t have to report when my last period was.  Although I tell doctors now, “I don’t get my period,” or “I have amenorrhea,” and go from there, I used to simply lie about it when I was younger because I didn’t know that, “I don’t get my period,” was actually an acceptable answer. My go-to was, “The first of the month,” and then sit there white-knuckling it because I was nervous they knew somehow I wasn’t fessing up.

Finally, I am fortunate that I have never felt truly unsafe when visiting medical facilities as an LGBTQIA individual. However, this is not always the case for LGBTQIA patients. If I felt that my safety was at issue by disclosing my intersex, I would not hesitate to lie to protect myself, and leave the facility if I was able to. Remember, you can always find a new doctor. Keeping yourself safe—even if you have to lie—is okay. #safetyfirst #always

Well, Anonymous, I hope that this helps you out! Before appointments, I’d recommend spending a few minutes thinking about what information you’re comfortable disclosing and how much—it will make you feel more comfortable during the appointment and feel empowered that you’re taking control of the conversation about your body (which is not what most of us have experienced being medicalized as kids).

Fingers and toes crossed that your next appointment goes great! <3

***

Claudia Astorino is an intersex activist living in NYC.  Claudia serves as Associate Director of Organization Intersex International’s USA chapter (OII-USA), coordinates the Annual Intersex Awareness Day (IAD) events in NYC, and writes for Full-Frontal Activism: Intersex and Awesome (her personal blog) and Autostraddle. Help support our contributors here on Patreon!

02.4.2016
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“How do I overcome the fear of looking like an idiot? As it applies to both dating and karaoke.”

-Question submitted by Anonymous

Kristin Says:

When I was four years old, my mom took me to my dad’s office building for the first time. I don’t remember anything about the visit past one critical moment that happened in the office cafeteria. I had carefully selected a bunless hot dog out of the vast array of lunchroom options and I must have been feeling quiteproud of myself, because I also asked to be allowed to cut the hot dog up into tiny pieces all on my own. Permission to cut the dog was granted, and I took my plastic fork and knife and proudly began my dissection. Two cuts in, however, I met with resistance. My knife was having difficulty making it all the way through the hot dog. I knew what would help: I just needed to use all the force in my mighty four-year-old body to push the knife through to the other side. I wasn’t yet well versed in physics, and so didn’t foresee the knife completing its cut, leaving my hand entirely, and ricocheting across the cafeteria alongside more than half of my hot dog.

Every single person in the cafeteria stopped, and turned to look at me.

Upon collectively realizing that one of their co-workers hadn’t been suddenly inspired to start a food fight, but rather that a sweet, innocent, helpless 4-year-old had just had some difficulty with her plasticware, they all laughed. They all laughed. My parents and every other grown-ass person in the room laughed, and their laughter meant one thing, and one thing only to me: They thought I wasn’t yet capable of being as big, as grown, or as smart as they were. They thought I was too small. I was devastated. Inconsolable.

In that moment, two things were happening at the very same time. The fire in my belly was screaming BUT YOU ARE SMART AND YOU DO KNOW HOW TO DO THIS THING AND YOU ARE STRONG AND BIG AND THEY DON’T KNOW ANYTHING, while the shrinking feeling in my chest was whimpering, what if you aren’t all of those things, what if they are right, what if you are too small, too stupid?

We’ve all had this experience, Anonymous, both as four-year-olds and as grown-ass adults, both cutting hot dogs and going on first dates… and if you are anything like me you still carry those same conflicting feelings of insistent confidence & total self-doubt. We value what others perceive sometimes (oftentimes) over our own knowledge of ourselves, and we doubt what we already know. Just like I knew I could cut that hot dog when I asked for permission to do so, you know that you are a fucking great human and that when you set out with the intention of having a blast, both karaoke and dating become much, much easier (and much more entertaining). But then! With just one sideways glance from another person, many of us suddenly lose that footing and wonder and worry that maybe we really weren’t capable, maybe we really weren’t so great, and maybe we should put down the microphone.

My advice to you is twofold: First, remember the tale of tiny Kristin and her bunless hotdog. Remember that the capabilities that I had in that moment did not change just because a room full of people thought I was small and cute. Many of them likely still even believed I was capable, but the bigger point is that even if all of them thought I was so small and silly, I was a four year old with the force of the whole universe inside of me. I could and did have the ability to cut that hotdog – not to mention the ability to learn from my missteps. Only I needed to know that to make it true, just like you are the only person who needs to know that you are the fucking best when you go on that date or belt out a RENT showtune. If the person or people you are with think otherwise, that’s on them. You are you, and you aren’t stupid. You’re a person. People are SO INTERESTING AND COMPLEX (annnnd for the record karaoke is not about singing talent, it is about having a goddamn blast.)

Second, the more we enjoy ourselves and speak our truth, the more attractive we become. I cannot tell you how much I lean on that knowledge every day of my life. I see people like Amanda Palmer or Elle King or Nicolette Mason or Janet Mock (and the list goes on!) who speak WHAT THEY FEEL and walk through this life not apologizing for their thoughts, their vision, their bodies, or any piece of themselves, and how goddamn brilliant and endlessly attractive I find them all because of that lived existence. Remember them, or the many other people who you admire because they are unapologetically themselves.

If you still find yourself wavering, feel free to tell your audience (whether that be your date, a full bar, or otherwise) the story of Kristin and her flying hot dog. It is usually a crowdpleaser.

01.26.2016
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“This past year I’ve had a run of hard things. My friends have been super supportive, but I can tell they’re getting drained and I hate feeling needy. What do you do when you still need extra support but you feel like you’ve exhausted your support system?”

-Question submitted by Anonymous

Kate Scelsa Says:

Let me just say right off the bat that man oh man I have BEEN THERE. There is nothing worse than needing help and on top of that feeling guilty about needing that help and then beating yourself up about feeling guilty and then not being able to just have nice, relaxing time with your friends (which could potentially really help) because you’re too busy being a bundle of “how can I make myself feel worse about this entire situation???”

The very very short answer to your question is, simply, therapy. A therapist’s job is to be a person who is not your friend who listens to anything you need to talk about, and supports you in working through what you need to work through. And because it is this person’s JOB to do this, you are released completely from feeling like a burden to them.

If you can afford therapy, if you have insurance that covers therapy, or if you have access to free or subsidized therapy (at school, at a community center, as part of a support group) TRY IT. It might take a couple tries to find someone you like (or a group that you feel comfortable in), but once you do, even just knowing that there is a time each week set aside for you to talk about what’s going on with you in which you don’t have to worry that you are bothering a friend is HUGE.

If you have an aversion to therapy—if, for example, you tried it once and had a bad experience, or maybe there’s a stigma in your family or in your community around going to a therapist—I really urge you to just give it a try. Your situation is exactly what therapy is meant for. And if it’s overwhelming to you to figure out how to find a therapist (or a group) that you’ll be comfortable with, try asking one of those friends who you’re worried you’ve been too needy with to help you with this one last big thing. They will probably be really happy to know that you’re seeking out this extra support, and you might be able to find someone through a personal recommendation.

The other half of my answer to your question is that, in addition to therapy, there’s a lot of work that you can do to build up your ability to be self sufficient in nurturing yourself and soothing yourself. This is a skill that needs to be actively worked on, and it improves with time. And you might be doing certain things already that help.

Do you need to take a bath every night with candlelight and a comic book? Do you need to write long, indulgent descriptions of your dreams as soon as you wake up every morning? Or does it help to do morning pages from the great creativity book “The Artist’s Way?” Does reading self-help books make you feel less alone? Do you feel better whenever you go roller skating? Does being around animals help you? Nature? What does your most Quiet and Alone Self need?

For me the secret is writing. I don’t always think that I want to do it, but it always makes me feel better. It’s almost as if I can feel all of the stuck stuff inside of me draining out onto the page (sorry, that’s gross). When I write regularly, I feel like I’m taking care of myself. And when I haven’t written for a while, all my neediness comes back. It’s like my brain is calling out for a way to process my life.

What you want to avoid is turning to harmful behaviors to self soothe. TV, junk food (or, um, late night cheese-eating parties aka “Night Cheese”), alcohol, and drugs might all temporarily stop the inner monologue in some ways, but they don’t help it. The way to help it is to use these self-soothing techniques that you’re going to develop as ways to tell yourself “I’m okay.” Because you are.

Once you figure out how to self-nurture even in little ways, you can start to do these things for yourself without anyone else’s permission. This will teach you that your needs are not unreasonable. When we have needs and we turn to other people to meet them and for whatever reason that person isn’t able to meet that need, we tend to judge the need and judge ourselves. We believe that we asked too much, and that needing what we needed in the first place was wrong or bad or “too much.”

The most empowering thing that you can do is realize that you are not “too much.” Nothing about you is too much.

Being alone with our needs is scary, because when bad things happen to us we feel depleted. We feel incapable of controlling anything. We feel that the universe is being ungenerous with us, so we don’t trust it to point us in the right direction.

Let yourself listen to the part of you that knows what these little things are that might help, and visualize this self-soothing work as simultaneously filtering old, stuck emotions and building up self-love resources.

Your friends who love you will still be there for you. And all of this will allow you to be there for them too. It sounds like they’ve given a lot to you, so see if you can find little ways to thank them. A silly gift. An “I love you” text. Share with them the ways in which you are learning to self soothe. Maybe they would like to go roller skating too. It will feel great to know that you can tell them how much they mean to you and how much you appreciate their support through this rough patch.

This road back to feeling okay isn’t always easy. But I promise you that it’s so worth it.

***

Kate Scelsa is the author of the young adult novel “Fans of the Impossible Life” (HarperCollins/Balzer+Bray). She grew up in New Jersey, went to school at Sarah Lawrence College, and now lives in Brooklyn with her wife and two black cats. Kate also performs with theater company Elevator Repair Service and is half of The Kate and Vin Scelsa Podcast, available on iTunes. Follow her on Twitter. Help support our contributors here on Patreon!

01.19.2016
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"I’m trans, and I’ve avoided going to any doctor for a long time. I have no idea how to find someone who will understand and make me feel safe. How do I find a trans inclusive doctor?? And what should I ask once I’m there to make sure they’re actually accepting?"

-Question submitted by Anonymous

Riley Johnson Says:

Congrats on seeking care after some time away! I have had this tendency for avoidance a time or two myself. Accessing care and being consistently on top of one’s health can be a challenge for trans folks. In 2011, the National Transgender Discrimination Survey found that 28% of respondents postponed medical care due to discrimination and 48% postponed because they couldn’t afford it. So we are definitely not alone, unfortunately. There is definitely help on the horizon though.

RAD Remedy is a community-driven, nonprofit organization that created the first review and referral site for trans, gender non-conforming, intersex, and queer health. The Referral Aggregator Database (RAD) is live in open beta and has approximately 3,000 providers with more being added daily. RAD Remedy aims to make it possible for folks to find great doctors nationwide and know precisely what to expect when accessing care. Providers come to RAD in one of three ways – through an intensive questionnaire about their practice and expertise, through referrals from community organizations, and through the reviews of folks like us who have seen the provider. I would encourage you to check the database first, and if you have trouble finding what you need, drop RAD Remedy a line and we’ll work with you to find a good solution. [I can be reached at riley@radremedy.org.]

Next, I’d like to talk briefly about strategies for getting care safely and knowing the questions you can ask to find a welcoming and knowledgeable provider. I think it’s important to be real and say that we as trans folks need to meet providers where they’re at. Looking for a provider who is an expert and has many trans clients is great, but it can be unrealistic at times depending on your location. More often you will find a provider who is interested in serving trans clients but hasn’t done so yet. TransLine operates a medical consultation service to help those providers, and RAD Remedy works with providers to improve their practices, forms, and processes to make them more welcoming.

It’s also important to note that what I consider acceptable in a provider may not be what you might. Gather all of the information you can and make the best choice for your situation. Before you make your choice, I find it’s helpful to sit down with yourself and identify the following:

Must Haves: [an example from my list: providers must use my right name.]
It Would Be Nice: [an example from my list: I would prefer that a provider has experience with trans clients but I’m willing to work with one who hasn’t done so yet.]
Dealbreakers: [an example from my list: messing up my medications, being hostile or fatphobic, etc.]

Some key questions you can ask the provider (or ask the front desk person to ask the provider personally) to ascertain whether or not a provider is trans-affirming:

1. I am a transgender man (trans woman, nonbinary person, etc.) in need of primary care/gynecological care/etc. Will this be a problem?
2. Does the provider have experience with trans clients?
3. Have the provider and clinic staff been trained about trans issues?

Here are some best practices for providers serving trans clients (and ways patients like us can subtly see whether a provider is affirming):

*Do the intake forms have a spot for preferred name and/or pronoun?
*Does the office location have gender neutral or single stall restrooms?
*Does the office art reflect the clientele? If there are pictures, are the people in them diverse in age, race, etc?
*Does the office have magazine subscriptions for LGBTQ publications?
*Does the office have an efficient and transparent means of providing feedback or complaints if needed?

Here are some key general strategies for getting the most out of your time with your provider and feeling safe while you do it:

*Use the buddy system. Other than in some domestic violence screenings, you’re allowed to have a friend or loved one in with you for office visits and exams. You can insist that they come in with you to the exam room.
*Know the questions you’d like answered or the medical issues you’re having. Some folks find it helpful to jot down a short list so they’ve got a plan for the visit. Try to keep your list short and prioritized, since you often won’t have a lot of time with the provider.
* If you are concerned about information being listed “on the record”, discuss the issue with your provider. Providers will usually tell you the sort of information they feel compelled to record and what can be discussed “off the record”.
*Take notes when in with the provider (or have your buddy do it). It can be hard to remember what gets said in a visit – particularly if you’re nervous.

Lastly, know that you have the right to access health care without experiencing discrimination. Earlier this year, a federal court in Minnesota issued a preliminary ruling that discrimination against an individual because of his gender identity is prohibited under Section 1557 of the Affordable Care Act. For more information on how to file a complaint with the Department of Health and Human Services (usually after a provider-based complaint has failed or if things are particularly egregious), check out their website.

***

Click through to read more about Riley and our other contributors!

12.8.2015
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"Why is 'being comfortable with yourself' like the hardest thing ever?"

- Question submitted by Anonymous

Dannielle Says:

Because the world is set up to make you feel bad so that you buy things to feel better.

You’re fat, buy a gym membership. You have wrinkles, buy this facelift. You’re trans, buy a new body or we won’t agree that’s your real gender.

“Being comfortable with yourself” isn’t actually about how you feel. It’s about how people perceive how you feel. That is very fucked up, but that is why is it so hard. There aren’t very many people putting out magazines, movies, TV shows, and music about how wonderful we are as individuals.

AND – There really isn’t a ton out there that actually allows you to see the world is painted a certain way and set up for the success of only a few, and that things are put in place to make 99% of people feel absolutely awful. You are having trouble feeling comfortable in your skin because you grew up in a world that desperately hopes you feel that way. If you feel uncomfortable you won’t stand up for your rights, you won’t go after your dreams, you won’t question authority, you won’t try. This society is hoping you won’t try. It’s unbelievable.

I think the best way to get out of this rut that we’ve put you in, is to recognize it and adopt the mantra, “fuck those people.” Who are those people YOU ASK?! Those people are all the people that make you feel judged. If you have those people in your life, get em out. If you have friends who make fun of you, who make your emotions feel invalid, fuck those people. If you have family members who only call to make you feel guilty, who blame you for their unhappiness, fuck those people. If you’re shopping in the men’s section and someone is looking at you weird, fuck those people. If you’re talking about minimalism super loud and people in your fave cafe are laughing at you, fuck those people. You don’t want people like that in your life, so don’t let ‘em in.

Spend your time and energy with people who make you feel like being yourself is the only way to be, people who support you, love you, inspire you. Work on things that make you feel great. Work with people that make you feel great. Stop wasting time on people and things that make you feel terrible. You will feel comfortable when you have dedicated yourself to being the happiest and healthiest version of you. You can have your version of the best life, a life where you’re truly comfortable. You just have to do it.

10.15.2015
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