Journey to a Hysterectomy: The Big Day and Afterwards

Content Warning: Discussion of female anatomy, in graphic and unpleasant detail. Discussion of gynecological problems, in graphic and unpleasant detail. Description of medical abuse. Ableism, sexism, ageism, all of which are internalized, active, and institutional. Reminder: I refer to these things as “content warnings” rather than “trigger warnings,” because I do not take responsibility for the mental health of my readers, some of whom I do not know well. I have listed the warnings that jumped out at me, but I may have missed something. I do not take responsibility for knowing the inside of anyone’s mind other than my own. Also, all experiences are mine and mine alone, and may not be suitable for generalizing to any larger group.

The morning of my surgery, Friday morning, we drove to the hospital with “The Final Countdown” blasting through open windows. I cried with happiness.

Upon checking in, the hospital scanned in my advance directive, and entered in the information from my medical ID necklace, since I would have to take it off for the surgery.

Okay, a bit of a digression here, for information purposes. If you don’t have an advance directive, you can make one fairly easily. Most states have standard forms for them, through your state bar association or through your state board of health. A quick Google search should turn it up. Make sure you’re using the latest version of whatever form is available; I actually rewrote mine in the days before my surgery, because I had been using a form from 2007, and even though the information hadn’t changed, I wanted to make sure it was in the most up to date format, which was a form from 2015. Also, if you can, take the time to go over with your selected agent everything that’s in your directive; make sure that they have a chance to ask you questions, and write the answers into your directive. Hopefully you’ll never need it, but it’s like having 911 available on your phone: you hope you’ll never need it, but do you really want a phone without the capability?

Also, medical ID bracelets and necklaces. American Medical ID makes excellent quality ID bracelets and necklaces with lots of space for information. They also offer, for a one-time fee, integration with Integrated Health Records, a service that lets you upload a huge amount of information to a website that health providers can access, but only you can alter. This includes the ability to upload a copy of your advance directive, insurance information, allergies, medical history, contact information, and a boatload of other stuff. If you’re like me, and have more important information than will easily fit on a piece of jewelry, it’s good to have something like this so people can access it.

Alright, back to the surgery day.

My husband was allowed back with me into the room where I changed into the hospital gown, and then there was a constant stream of people coming through.

First a set of nurses going over my information as listed in the computer, including my medication allergies, history of seizures, risk of falling, and other information. They added fall risk and allergy alert wristbands to the hospital wristband I already had.

Then a set of nurses giving me an IV. They were wonderful in seeing to my comfort, covering me with warm blankets. They also put on a set of leg wraps that would prevent blood clots during the surgery.

Then another nurse to give me a scopolamine anti-nausea patch, since I’ve had nausea issues with anesthesia before.

The anesthesiologist came to talk to me, and we went over my history, including my anxieties about anesthesia (one of my greatest fears in the world is surgical awareness). I’ve had issues with dental surgery, with anesthesia cutting out very suddenly mid-procedure, so we went over that. She went over with me exactly what I would experience leading up to the surgery: first they would give me a sedative that would relax me, and also might make me forgetful of the next period of time (this varies from patient to patient). They would then take me to the operating room, where I would be positioned for surgery, and they would make sure that the position for surgery was okay for my back. Then they would administer the anesthesia, and I would speak a countdown from ten, or at least as far as I could get before falling asleep.

My gynecologist/surgeon came to talk to me, to go over the surgical procedure itself one more time, making sure I was clear on everything, and making sure I had no more questions going into the procedure.

Then everybody at once came back, made sure I was all ready to go, and they gave me the sedative. After that, I only remember flashes of going down the hallway, a brief flash inside the operating room, and then waking up in the bed after the surgery.

In retrospect, I should have known I was going to have problems with anesthesia from the moment I woke up, but I was really woozy from the anesthesia, and not really in a position to self-advocate.

It’s true that one incident does not make data, or a pattern. When I had my gall bladder out in 2007, I had all sorts of nausea issues, but we weren’t sure what their origin was: it could have been the fact that I was recovering from surgery on my digestive system; it could have been a reaction to the anesthesia; it could have been the infection I developed after the surgery. Now, after this surgery, we know that my body does not like anesthesia, and I need to stay an extra night in the hospital, no matter how fine I seem.

We didn’t know that yet.

I woke up shaking like a leaf, but otherwise doing great. The nurses helped me sit up to a position where I was breathing better, but I had a slight rattle in my lungs. I was given a spirometer, to breathe in and out. I would take this home with me that afternoon. It hurt, naturally, to breathe in that deeply right after surgery, but I did it anyway, which impressed the nurses. Apparently a lot of people don’t expect breathing to hurt – it’s something I’ve lived with so long, it didn’t even phase me. My pain levels were already, even directly after the surgery, lower than normal. I was just incredibly sleepy, and having a lot of trouble staying conscious.

The nurses helped me move from the bed to a reclining chair. I fell asleep again several times, and eventually woke up to my husband sitting by my side. I spent a long time in the recovery area, and once or twice he switched out with my father, who had turned up in case we needed him.

Eventually it came time to deal with the question of whether or not I should go ahead and go home. I felt woozy enough that I wasn’t sure it was a good idea, but apparently that was normal. I felt fine, other than that – better than I had in a long time before the surgery. So a nurse helped me to a wheelchair, and helped me to the car, and my husband drove me home, where I slept for pretty much the rest of the day.

The next day, I felt great when I got up, but the scopolamine patch had tangled in my hair, and it came off when I brushed my hair. I think that was the start of the problems.

I had been scheduled to go out to dinner with my father and stepmom on Saturday, but that was canceled when I projectile vomited very suddenly, about a half hour later. I spent most of the rest of that afternoon sitting on the bathroom floor, throwing up all the liquid and the few solids I’d ingested that day and the previous. I threw up until there was nothing left, and then brought up bile. We called my gynecologist, who called in a prescription for anti-nausea suppositories.

I lasted through that night and most of the following day, but it became apparent that the Phenergan suppositories weren’t lasting long enough by a long shot, and weren’t effective enough, so back to the hospital I went, on Sunday.

At this point, I was also in some serious pain, because vomiting causes all sorts of muscle contractions that don’t mesh well with abdominal surgery, and I couldn’t keep down any medications, including my normal medications for my usual conditions, so absolutely everything was flaring up. They gave me fluids, Toradol, Phenergan, and Zofran, intravenously, and that helped immediately. It was determined, after several hours at the emergency room, that I should stay the night at the hospital. My pain medications were switched from Toradol to Dilaudid, which I had never taken before but which I certainly found effective.

I went home the next morning with more suppositories and with Zofran pills as well, and instructions to alternate the two, and also a new scopolamine patch, this time covered with medical tape to prevent a similar mishap to the previous one.

Most of the last week has passed in a bit of a blur; all three anti-nausea medications cause sleepiness, and between the three I’ve spent the vast majority of the time unconscious, but I suppose it’s what I’ve needed to recover. I went gradually from three anti-nausea medications to two to one, and was able to go back on my normal medications as well. My incisions have healed up nicely. There are no stitches; they used a surgical adhesive instead, since the cuts are so small. They’ve started to itch slightly, in the way that cuts do when they are healing, but it’s ignorable.

My pain levels are amazingly low. There’s still some abdominal pain, because I’m still healing from surgery. Surgery hurts, obviously. But the pain that’s there is so much less than the everyday pain I experienced from my ovaries and uterus, and it’s not pain that radiates through my back and hips and legs. This is already an improvement in my quality of life, and it’s only going to get better from here. It doesn’t fix everything, but it sure does make a difference.

Journey to a Hysterectomy: The Final Week

Content Warning: Discussion of female anatomy, in graphic and unpleasant detail. Discussion of gynecological problems, in graphic and unpleasant detail. Description of medical abuse. Ableism, sexism, ageism, all of which are internalized, active, and institutional. Reminder: I refer to these things as “content warnings” rather than “trigger warnings,” because I do not take responsibility for the mental health of my readers, some of whom I do not know well. I have listed the warnings that jumped out at me, but I may have missed something. I do not take responsibility for knowing the inside of anyone’s mind other than my own. Also, all experiences are mine and mine alone, and may not be suitable for generalizing to any larger group.

The ten days before the surgery were rough.

As a disabled person, I rely on a number of treatments of different types, ranging from prescriptions to over the counter medications to holistic and herbal treatments, to keep myself able to complete even the most basic tasks. Unfortunately, a lot of those turned out to be restricted to one degree or another for the ten days before my operation.

I had to stop taking my over the counter painkillers, which were already the fallback from my insurance recently refusing to cover my prescription painkillers anymore.

I was not allowed to drink tea – and teas of various kinds have been an important part of my healthcare.

At five days before the surgery, I had to start showering with a very strong antibacterial soap called Hibiclens, which is one of the kinds of soap used by surgeons to wash up before operations. It felt vaguely like I was washing my skin off, even though I wasn’t having any of my very common allergic reactions.

At three days before the surgery, I had to start using vaginal douche solution. Even after warming it with my hands, it was cold enough that the process left me shivering for over an hour.

The day before the surgery, I was restricted to a liquid diet. I drank a lot of Gatorade, and had meals of straight chicken broth.

The night before the surgery, I had to use a laxative enema, to ensure that there was the maximum amount of room in my abdominal cavity, so that my gynecologist (who was also my surgeon) would have less risk of puncturing anything that wasn’t supposed to be punctured. This was about as unpleasant and gross as I expected, but at least didn’t last very long.

Altogether, I spent the last ten days waiting for the surgery feeling abraded inside and out, and the fact that I had been off of my birth control pills for a month at that point also meant that I was essentially in a constant state of PMS for the entire time.

Then my very last period hit, in the last week before the surgery. It became apparent that, while the pills were certainly not doing what they were supposed to in terms of regulating my cycle and making my periods bearable, they were still helping, because that was a bad one. I bled incredibly fast, for a long time. My cramps were absolutely awful, and I was pretty much bedridden for those five days. I was concerned more than once that I would have to go to the emergency room because of the speed at which I was bleeding, but it didn’t quite come to that.

(I think I unnerved my husband at least once, when he heard me yelling at my own reproductive system. “Do your worst, bitch. This is your last chance.”)

I had a lot of instructions, and I followed them to the letter. I also pretty much quarantined myself against disease. I have a depressed immune system, and if I became ill in the week before my surgery, it could be canceled. So every time I planned to see someone socially, I checked to see if they were feeling well, and if not, I apologetically put them off. Fortunately, my friends are awesome and understanding, and they realized how much I could not afford to risk this.

The night before my surgery, I was finally allowed to take painkillers, to have some of them in my system at the time of surgery. Because my surgery was at 7:30, I had to arrive at the hospital at 5:30, which meant getting up around 4am. I decided it was pretty much not worth going to bed. I have a sleep disorder, which means I sleep unpredictably. The day before, I napped at random, as I tend to do, and I napped some that night. I also packed an overnight bag, just in case I wound up staying at the hospital.

I couldn’t have slept if I tried. I was too excited. I have a lot of medical anxiety, from my history, but it was pretty much completely drowned out by my excitement.

Next entry will cover the surgery itself, and the aftermath.

Journey to a Hysterectomy: The Last Month

Content Warning: Discussion of female anatomy, in graphic and unpleasant detail. Discussion of gynecological problems, in graphic and unpleasant detail. Description of medical abuse. Ableism, sexism, ageism, all of which are internalized, active, and institutional. Reminder: I refer to these things as “content warnings” rather than “trigger warnings,” because I do not take responsibility for the mental health of my readers, some of whom I do not know well. I have listed the warnings that jumped out at me, but I may have missed something. I do not take responsibility for knowing the inside of anyone’s mind other than my own. Also, all experiences are mine and mine alone, and may not be suitable for generalizing to any larger group.

A little over a month ago, I finally went to see a new gynecologist, the one recommended to me by my primary care doctor. I was nervous, because I’m always nervous when seeing a new medical professional, and because I’d never seen a male gynecologist before.

It turns out I found one of those rare gems in the profession: a male doctor who became a gynecologist because he realized that, being male, he would be able to get things done and be listened to in ways that a woman wouldn’t, and decided to use that to help women who needed medical help. As a result of this line of reasoning, he’s also predisposed to listen to his patients, which my primary care doctor had told me when recommending him.

My first fear was that it would take me months to get an appointment. As a new patient, trying to see a specialist, I have often had the following experience:

“Hi, this is Dr. [NAME]’s office, how can I help you?”
“I need to make an appointment.”
[Discussion of my problems and reason for needing an appointment urgently, and the fact that I’m a new patient.]
“We can work you in three months from now.”

This time, I got “Can you come in later this week? We have an opening.” And so it went.

The actual appointment

Everything happened shockingly fast. I went in, checked in, and gave all my data – height, weight, blood pressure, medical history rundown, medications taken, all the usual stuff – to the nurses. They were very welcoming, knowing I was a new patient, and explained that I would be getting a pelvic exam that day, though not a pap smear because I was menstruating.

I explained my anxieties surrounding pelvic exams, as a result of having been forced to receive them without consent from emergency doctors in the past. They assured me that a female nurse would be in the room at all times, as a witness to all practices, and asked if there was anything else that would help me be more comfortable, and asked me if I would be willing to sign a consent form before receiving the exam, so that everyone would be on the same page regarding that issue.

I responded that I need clarity and thorough explanations. I am very familiar with my own body and its issues, and I have had a LOT of examinations of various types. I know the basic procedures, but it helps me to know exactly what is going to be done, in what order, when, and why, and for how long. They were extremely accommodating, and never made me feel like my requests were burdensome or disrespectful – and that was when I started to feel like this might actually go somewhere positive.

Another experience common to both women and disabled people, and therefore particularly common to disabled women, is that of being treated as though we know nothing about our own health, and being treated as though self-advocacy in the doctor’s office is somehow disrespectful of the doctor’s own expertise. Now, obviously, it is possible to advocate in a manner that is disrespectful – but advocacy itself is not, by definition, disrespectful, and I have long believed that any doctor who treats it as such is not one whom any patient should trust with their health.

When I actually met the doctor, all of this was borne out: he started by telling me he was glad I was so involved in advocating for my own health, and was glad that I have taken the time to learn about my own conditions. He asked me clarifying questions, obviously not questioning the validity of my knowledge but just trying to get as much information as possible. His questions were beautifully formulated, because I could tell that if, by chance, I HAD made some huge mistake or knowledge gap regarding my health, his questions would have caught it, but their actual goal wasn’t to trip me up or find such things. He started his questioning from the assumption that my own information was all correct and based upon proper research and inquiry from other doctors who also knew what they were doing unless I said otherwise.
He then explained the exact procedure of the pelvic exam, the purposes of it, including identifying any reasons why I might not be a good candidate for a hysterectomy. A nurse entered the room, and at this point I signed the consent forms.

He left the room, and I changed into the medical wraps – you know the ones, the disposable paper robes – and arranged myself on the chair for the exam. The nurse entered first, asked if I was ready, and the doctor came back in only when I gave permission. He asked permission for every step of the process, from even before the very first time he touched my body.

This is what we should expect from this kind of examination.

The examination was painful, but it couldn’t really have been anything else: I experience pain in my pelvic region and reproductive system constantly. (A note about this: when someone who experiences chronic pain says they are in constant pain, this is not an exaggeration. I am in pain 100% of the time. If I am awake, I am in pain. End of story. Pelvic pain, in my reproductive system, is part of that, and has been for almost two decades.) Poking directly at it makes it worse, and there’s not much way around that. He did some very specific poking and questioning, and came to the conclusion that there is nothing else that could cause the specific symptoms I experience except endometriosis, and also that I am an excellent candidate for a minimally invasive hysterectomy, the latest procedure and the highest standard of surgical care of this variety.

I burst into tears on the spot. I was a little embarrassed afterward, but I just couldn’t help it. I’d entered the office more than half convinced that I would be told I wasn’t a candidate, or that we should try a bunch of other things first, possibly including some things I had already tried multiple times before. And here was a doctor telling me that exactly what I thought I needed, was what I in fact needed, and he was going to help me make it happen.

We started filling out paperwork, setting a surgery date, making lists of things that had to be done before it, getting insurance approval for the whole thing (which, it turned out, with a male doctor being very insistent, went quite smoothly).

The whole thing took less than an hour.

Pre-operative appointments
I needed four appointments: an ultrasound, a pre-operative appointment with my primary care physician to clear me for surgery, an appointment with my neurologist to discuss my risk factors regarding hormone replacements and therefore whether or not my ovaries should be removed as well, and a pre-operative appointment with the gynecologist, who will also be my surgeon, to give me more information. Additionally, I was told to expect a phone call from a hospital nurse.

The ultrasound was primarily to make sure there were no surprises lurking in my system that might mean the surgery could be more complicated than foreseen. Because I was still menstruating, I couldn’t complete the standard procedure of drinking huge amounts of water and not urinating for hours, without extreme pain, so I opted for a transvaginal ultrasound as, oddly enough, the less uncomfortable option. I’d had both before, so this decision came from experience. This is not to say that a TVU is pleasant; particularly during menstrual cramping, it was extremely painful, and again I had to run through all of my anxiety issues and consent issues with examinations, but fortunately I again was working with consummate professionals who understood exactly the gravity of the issues at hand. The procedure itself didn’t take tremendously long, fortunately, but the pain lasted for days. The images were forwarded directly to my gynecologist, and nothing surprising was found; fibroids in my ovaries, but we’d known about those.

The neurology appointment was very involved, going over familial and genetic risk factors of stroke, as well as my own complex seizure and migraine history. We eventually concluded that because the hormone replacements used after hysterectomy are natural hormones rather than synthetic, the risk factors are sufficiently lower that I should go ahead and have my ovaries out.

The pre-operative appointment with my primary care physician was a physical and some bloodwork, and nothing remotely unexpected came up.

Then came the nurse phone call, which was mostly an interview in which I gave every bit of information about my health history anyone could think to ask for.

The pre-operative appointment with the gynecologist involved bringing my husband with me, and getting kind of an infodump regarding the last few days of surgery preparation (which will be part of the next lovely entry), what to expect afterward, how the surgery itself will be performed, and a whole lot of other information.

I’m now in the stage of that final preparation, and will be posting more about that somewhere around Thursday.

Blog Reactivated! My Journey to a Hysterectomy: Prologue

Hi, all. I’m back. It’s been a while, because I’ve been dealing with graduate school, a diagnosis of multiple sclerosis, and buying a condo.

It’s been a roller coaster ride.

Most recently, things are taking a wonderful upturn in that I’m scheduled to get a hysterectomy in early June. This might not sound at first like an upturn, but I have been trying to get this surgery for a little over a decade. It’s been a long journey to get to this point, and it’s going to be quite a trip going through the surgery and recovery.

Given the degree to which there are social justice issues of feminism and disability rights involved in my case, I’m going to blog it all here, among other entries, in the hope that perhaps someone else out there might not have to invent the same wheel. This entry can be considered a prologue of sorts: how I got here, what the last twenty years of my reproductive health have been like, why it is so important for people like me to be able to have access to this kind of care, and what has kept me from having it until now, and what finally made it possible.

Content Warning: Discussion of female anatomy, in graphic and unpleasant detail. Discussion of gynecological problems, in graphic and unpleasant detail. Description of medical abuse. Ableism, sexism, ageism, all of which are internalized, active, and institutional. Reminder: I refer to these things as “content warnings” rather than “trigger warnings,” because I do not take responsibility for the mental health of my readers, some of whom I do not know well. I have listed the warnings that jumped out at me, but I may have missed something. I do not take responsibility for knowing the inside of anyone’s mind other than my own. Also, all experiences are mine and mine alone, and may not be suitable for generalizing to any larger group.

The Early Days

I started menstruating late for people my age, late age 13, almost 14. My parents went out of their way to make it an affirming, empowering experience. It might have worked if I hadn’t started displaying similar symptoms to my mother – heavy bleeding, awful cramps, nausea and illness, unreliable cycles – from the very beginning. I started taking hormone treatments before I was 15.

I don’t know when I first started missing classes because of period symptoms, but it was before college. It can be hard to tell, even in retrospect, because it was also around this time that my health in general started to decline. As my gynecological symptoms got worse, though, which they did gradually year by year and sometimes even month by month, I missed more classes. Fortunately, I attended a women’s college, where people usually understood this, but because I didn’t have an actual diagnosis for any of my health problems, I wasn’t able to receive any accommodations, and my grades suffered.

I was constantly faced with skepticism regarding my experiences, except by my fantastic primary care physician and gynecologist. Specialists were convinced I was exaggerating. Insurance companies refused to cover tests, because I was “too young” to be experiencing chronic pain. And, though my gynecologist tried to get me tested for a number of things, insurance companies would not even consider any kind of testing that could lead to an intervention, because I was now considered to be “of childbearing age,” once I was 15 years old.

College, Graduate School, and Getting Married

I made it through college – barely. My gynecological problems were just a subset of my larger health issues, which still had no names attached. I started to learn during my college years just how dismissive emergency room physicians could be of a woman’s pain.

During my senior year of college, I participated in a health study, designed to help improve the bedside manner of young male doctors working with female patients. I was asked to submit a recording of a detailed description of my menstrual symptoms for use in their training program, which I did, in exchange for $50 and the knowledge that perhaps it might make a difference.
Only it didn’t, because they rejected my sample on the grounds that my description might scare the young male doctors.

This was when I first started realizing how broken our system is. Here is a rough approximation of the description I gave:

“In the week before my period begins, I experience depression, mood swings, anger, anxiety, and general peak reactions to all stimuli. It feels as though, if there were a volume knob on the world, it has been turned all the way up. Colors are bright enough to hurt, everything sounds loud, my skin feels everything more sensitively, and I get overstimulated in minutes. This then becomes even more intense on the first day of my period, finally calming down around the third or fourth day. During the first few days of my period, I usually feel an intense need to close myself in a small space for safety.
I haven’t ruined a pair of underwear in years. In addition to getting plenty of warning from PMS, when I start menstruating, I know it, because I feel a tearing sensation deep inside me, just above the center of my pubic bone, followed by an intense nerve pain going all the way out along my pelvis. I then experience what feels very much like the entire contents of my abdomen falling out, along with more tearing. I start bleeding intensely, usually going through menstrual products at two to three times the rate listed on the box. I bleed for about a week, with these symptoms constant throughout. I experience intermittent nausea, headaches, full body aches as if I have the flu, spasms in my arms and legs, and dizziness and blurred vision. About once a year, the bleeding gets intense enough that I pass out, or the pain gets bad enough that I can’t hold back vocalizing it, and I go to the hospital.”

Apparently male doctors can’t handle this information. The word “traumatized” was actually used in the feedback I received from the program.

If the people in whose hands I must put my healthcare decisions might be “traumatized” by my experiences, and this is considered a valid reason to discard my testimony, I thought, this explains so much about everything that has happened to me so far.

I started watching for signs of this disregard in the system, and it immediately leapt out. I couldn’t un-see it. I worried that perhaps I was acting on confirmation bias, and I tried to un-see it. I must be overreacting, I thought. I was being overemotional, irrational, refusing to take responsibility for my own problems.

I started doing research, and found that, in fact, my case wasn’t even unusual, much less unique.

My health continued to decline as I completed an intensive Master’s degree program, and I started the work of educating the men in my life, most importantly my husband-to-be, about these problems. Initially, I ran headlong into the stigma surrounding women’s health, but he was fantastic about breaking down those barriers for himself as well as me. It took work, before he was able to go down the family planning and women’s health aisle of a pharmacy and get my products without being embarrassed, but he laughed at himself until he managed – and the effects of that work have lasted through today, when he can roll his eyes right along with me at guys looking furtively around or even apologizing to cashiers while buying boxes of tampons.

The other, even more important, support he gave me was these three words: “I believe you.” He didn’t necessarily understand, and it took some work to really make that communication happen, but he was willing to start from the assumption that I was telling the truth, which was more than most of the people in my life, and more than almost any health care professionals, were willing to do.

The Last Ten Years

A few years into my marriage, in late 2006, I discovered I was pregnant, in just about the most traumatic way possible: I miscarried.

I thought at first it was just a really awful period; I was miscarrying early enough that the two were almost indistinguishable. I took a pregnancy test when it got bad enough that it was notably different from previous really bad periods, and it came back positive. And we went to the emergency room.

First, the people at the desk belittled my concerns, and I passed out on the emergency room floor from the bleeding.

I woke up in a bed in the emergency room, and the doctor proceeded to tell me I had fainted from the sight of my own blood, as if I hadn’t seen it every month for the previous twelve years.

He refused to let me see the hospital’s gynecologist, and said he would do the pelvic exam himself. I refused, and he told me I didn’t have a choice, and said he would have nurses hold me down while he performed the exam. Rather than do that, I let him – and it took almost a decade before I fully realized or admitted to myself that this was abuse and assault.

He then diagnosed me with hysteria.

Let me say that again.

He formally diagnosed me with hysteria. In 2006.

I was furious. I had connections with the hospital through my father-in-law, who ensured that this doctor lost his job. (Unfortunately, I discovered through a car accident about eighteen months later, he found a job at another hospital nearby. I made sure he lost that one too, because he handled my car accident about as well as he handled my miscarriage. I have no idea where he is now.)

About a year before this, my actual gynecologist had retired, after being diagnosed with breast cancer. She had done amazing work for many years, and earned her retirement, and I wish her all the best, but I still mourn the fact that I can’t work with her anymore.

I looked for a new gynecologist, and saw several, all with the same results: they see “fibromyalgia” on my chart, and immediately dismiss any and all claims I make. They would not give me painkillers for my symptoms, even non-opioid ones. They would not give me muscle relaxers for my cramps. They would not give me anti-nausea medications. And they certainly wouldn’t consider a hysterectomy, even though the final recommendation from my previous gynecologist had been to work toward one as soon as I turned 35, the age at which insurance companies would finally consider covering the surgery.

Where I Am Today

As a result of the MS and aftereffects of a concussion in 2013, I have a sleep disorder. I sleep a lot, and very deeply. One quirk of this is that pain sometimes shows up in my dreams, in some narrative form that interrupts whatever was happening.

I have had repeated dreams in the last year while menstruating, in which I get shot in the abdomen. Recently, there was a twist in this, that I had to have surgery, an emergency hysterectomy. I woke up sobbing, because it was not real. My husband held me while I cried for over an hour, repeating “I want it gone.”

By telling that dream to the my primary care physician at the right time, I finally managed to get a recommendation for a doctor who specializes in getting women the healthcare they need.

It turns out that doctors are faced with similar weaponized statistics as teachers: certain outcomes are categorized as “failures,” even if the patient feels otherwise, and a certain proportion of failures on a doctor’s record can put their license in jeopardy. (I am terrified of this happening to my primary care physician.) I have tried everything other than surgery, at this point, and even doctors who have admitted that it is probably what I need have then sent me away because they could not perform it.

I now work with a gynecologist who recently put together a practice entirely out of experienced doctors who can afford those “failures” on their records, and have decided as a group to take those on, in order to give patients the healthcare they need, and when they eventually build up enough failures that their licenses are revoked, they’ll be old enough for retirement. In the meantime, they’re racking up awards alongside the black marks, which means they’ll be able to last longer.

I have a hysterectomy scheduled at the beginning of June. I have never been happier about medical news.

It should not have taken me twenty years to get the surgery I need, first until some arbitrary group of insurers decided I was old enough that I might not change my mind, and then until I found a doctor who could afford to have “gave effective care to a patient in pain” on their record.

This attitude also further stigmatizes chronic health problems that can cause a woman to be unable to bear children, through hysterectomy or otherwise. In my case, literally the worst possible outcome was considered to be “woman is unable to have children.” Not “woman dies of excessive bleeding on emergency room floor,” which has nearly happened on several occasions, not “woman is disabled by gynecological symptoms,” which would be true even if my other health problems magically vanished tomorrow, or even “woman’s quality of life is drastically reduced by chronic pain.” My decisions about what should be prioritized in my health care were disregarded at every turn, until yesterday.

And now I still have to jump through administrative hoops to get everything covered, and make sure that I receive the care I need surrounding my surgery (e.g., make sure the hospital will give me painkillers afterward, since I have fibromyalgia and am therefore considered a drug seeker by definition, as I discovered the last time I was hospitalized).

This is, as my new gynecologist put it, “unconscionable.” And I am one of the lucky ones: I can afford my health care, I can advocate for myself, and I am supported.

I am thrilled and excited that this change in my life is about to happen. I want this so desperately I don’t have words for it. I cried all over my new gynecologist when he told me I could have the surgery. I am aware of the dangers and risks of surgery, but I have no qualms about this course of action.

This is right for me. It is so important that I be able to pursue it. It’s an amazingly novel feeling, being in control of such an important aspect of my health, and I am trying to remember to take the time to revel in it.

I am proud of this accomplishment. It has been a long road to get here, and I’m not done yet.

I am not a failure on the part of my doctor.

I am not broken.

I am not incomplete.

I am not a tragedy.

I will bear my battle scars proudly.

Straddling the Privilege Line: Thoughts on Intersectionality

CONTENT WARNING: Discussions of various kinds of discrimination in the entry and probably the comments as well..

In the wake of the deaths of Michael Brown and Eric Garner, and in the wake of the Rolling Stone journalistic debacle concerning the rape culture at UVA, I have been doing a lot of thinking about the ways in which I benefit from privilege, and the ways in which I do not, and the ways in which those things intersect. There are a number of ways in which I personally have benefited greatly from the cultures of power that come with my race and financial background and education, but at the same time have suffered for my gender, disability, and religion. As I consider these items individually, I also realize the ways in which they intersect with one another. Intersectionality is taking center stage in more discussions of privilege, which is great, but there is one type of intersectionality which I haven’t seen discussed elsewhere, which I will be attempting to discuss at least somewhat here: the intersection of privilege and lack of privilege, in the same person. This is sufficiently complicated that a single blog entry, even the full biography of a single person far more complex than I, can’t even begin to cover it, but I’m hoping to at least get some readers thinking, maybe get some discussion rolling.

I have to begin by listing some of the ways in which I am, and am not, privileged in my own life. Compiling this list took some serious soul-searching, and some careful thinking about detail, and some research. Some of these items were obvious; others, not so much.

Ways in which I am privileged:
I am white.
I am cisgendered.
I am straight.
I am monosexual.
I am a native speaker of the local vernacular.
I am monoracial.
I can read and write.
I speak without impediment.
I can use all five senses to a societally functional degree.
I have a fixed address.
I have a driver’s license and a personal vehicle.
I am married.
I am in a monogamous relationship.
I am in a same-race relationship.
My age is between 18 and 50.
I have a college education, and an advanced degree.
I was raised by my biological parents.
I am a natural-born citizen of the nation in which I live.

Ways in which I am not privileged:
I am female.
I am physically disabled.
I have a mild learning disability.
I have a mild mental illness.
I have no children, either biologically or by adoption.
I am unable to have children biologically.
I wear glasses, and am unable to wear corrective lenses that are not visible.
I am non-Christian.
My spirituality is hybrid – meaning, I identify with more than one faith.
I am in a multifaith marriage.
I do not own a residential property.
I am a teacher, an occupation which is under constant political attack.
I am a union member, a position which is under constant political attack.
I am unemployed.
My field of study is outside the STEM fields, the “core” curriculum fields, and the vocational fields.
My Southern heritage is identifiable by my accent.
I am overweight.
I have obvious Russian heritage.

I am sure that if I took months, years longer to write this list, I could continue to add to both parts of it. I am sure that some readers are looking at some items on it and wondering, why does this item afford privilege, or why does that item imply a lack of privilege. If so, feel free to ask.

I’m also sure that there are some of you out there who are bristling because you share some of the traits on the “privileged” list, or who do not share some trait on the “not privileged” list. Let me make something clear to you: I do not apologize for any of the traits on either list. These are simply descriptors of who I am. For example, I do not feel that I need to apologize for being either white or straight. Neither makes me a bad person. But both make me a person who inherently befits from systems created for the benefit of people like me, at the expense of people who do not share those specific traits. I do not have to feel shame at being white in order to acknowledge my white privilege; I do not have to feel guilt at being straight in order to acknowledge my straight privilege. You don’t either. I don’t think you have anything to apologize for by virtue of your gender, or race, or sexual orientation. Your actions and attitudes are what matter, and the same goes for me. For a great reference on this, see John Scalzi’s article “Straight White Male: The Lowest Difficulty Setting There Is,” here. The article misses some complexities of privilege, and many, many types thereof (there are many types of privilege besides sexual orientation, race, and gender) but it’s just meant to be a starting point, and it’s a great one.

Having traits that fall on both sides of the privilege line gives me a very important obligation when dealing with issues in my life: I have to figure out which issues are at play. It is important, in order to make sure that I don’t take a passive (or even an active) role in institutional racism, that I take care not to appropriate issues of race as issues of gender, or disability, when supporting a friend who is targeted with discrimination. It is also important that I be careful not to misinform others, lest I put them in a position of inadvertently doing the same for some other issue, when I speak of discrimination of which I have myself been the target.

I believe it is also vital that society begin to acknowledge the ways in which items of privilege can actually intensify the ways in which lack of privilege affects certain individuals. A high-profile example in recent news has been the scapegoating of union workers in the aftermath of the Eric Garner case. The generalized anger at the miscarriage of justice has been directed at unions, which are already the target of a significant amount of rhetoric aimed at reducing their power and staining the reputation of all those associated with them, placing those who participate in any form of organized labor, particularly those in any part of the public sector, in a position of lack of privilege. Law enforcement, as authority figures, are also given a form of privilege, and as such, this intensifies the anger at the role of the unions in such problematic cases.

A more common situation of combined privilege and lack, where the latter is intensified by the former, is one I find myself in. I benefit from the privilege of my age. Being between the ages of 18 and 50, I am part of the age bracket which is the target of most marketing. Television ratings focus on my age group. Political advertising and polling look more closely at my opinions than at the opinions of those outside my group (though this is changing – more on this shortly). At the same time, because I am unable to have children, the fact that I am in the age when I am constantly asked when I will be bringing the next generation into the world, when, as a woman, I am seen as failing to fulfill my obligations to society on some level because I am unable to have children, my age actually makes that part of my lack of privilege more intense. I have actually seen this come up in a professional scenario: for various reasons, I had to reveal to one of my superiors exactly why I had been absent from work and in the hospital, and when the reason turned out to be related to gynecology and miscarriage, my right to confidentiality was in fact completely disregarded. For months, I was treated differently by everyone who knew, as if my failure to have children meant that I was less competent at everything else I might do; once I was even told to my face, in public, that perhaps, if I couldn’t have children of my own, I shouldn’t be supervising other people’s kids, because there was no way I would ever fully understand them. If my age were not within the bracket when I am “expected” to produce children, this would not have been an issue. I know many other women who have gone through similar experiences.

Another aspect of the privilege discussion which I feel has gone woefully unremarked, is the degree to which some of these categories are in flux. The degree to which it matters that I am obviously Russian changes with global culture and politics. Overall, age is gradually becoming less of an issue, though nowhere near quickly enough. Particularly in the marketing arena, companies and campaigns are realizing that focusing exclusively on the 18-50 bracket is self-defeating, and are branching out. Unfortunately, workplace discrimination and other forms of abuse against both children and older citizens are still far too rampant. It is my hope that the pervasiveness of marketing will actually be a force for good in this particular case, and that marketers’ realization that people of other ages are also people with their own needs and desires and complex lives, will push the same realization on the rest of the public.

One of the most interesting parts of the realization of the divided issues of privilege and lack, is the visibility of different kinds of progress. So many different campaigns, with different degrees of success, at different stages of development, are available for observation, study, and, of course, participation and support. It’s delightful to watch new groups emerge as their issues are finally acknowledged by enough people to from a widely visible activist community, and it’s exciting to learn those new perspectives. All of these groups are doing things differently, and we all have things we can learn from each other – but only if we maintain a clear awareness of what is really going on with all of our lives, even when that involves some unpleasant mirror-gazing.

Some Notes on Disability and Body-Positivity

Disclaimer: The following is based upon my own experiences as woman with recent experience of physical disability. Please do not assume that my experience is exactly representative of all disabled women. If there is a disabled woman in your life, the best care you can give her is to be discovered by listening to what she has to say about her own experiences.

One of the most important strategies for coping with disability and illness is maintaining a positive attitude. This is not only fairly obvious to most observers, but also conforms to standard medical wisdom. Unfortunately, it’s also a hell of a lot easier said than done, in part because people with disabilities, particularly women with disabilities, are constantly bombarded with messages of varying levels of subtlety that tell us our bodies are less valuable than those of people with perfect health, and that our accomplishments will always matter less, and that our relationships will always rest on a fragile foundation because of conditions that may be out of our control.

Unless you live under a virtual rock and just emerge occasionally to read blogs on WordPress (which might be a really healthy lifestyle, given the net these days), you probably use some service on the internet which tracks information about you: an online retailer, an email service, social media, online news sources, or any one of a variety of other websites that keep track of who reads what and what interests might overlap. The ads you see and the links with which you are presented are often selected to match specific data about you (sometimes with hilariously wrong assumptions – Facebook in particular is known for this). If you have a disability, chances are this information has made it into some kind of data aggregator and affects the messages you see.

These messages are crafted primarily for the groups in the world who possess privilege: white, able-bodied, straight, cisgender, prevalent-religion-following (Christian, in the USA), vernacular-speaking (English, in the USA), wealthy, employed, non-single men. Some messages are specifically crafted for a group that changes one of these categories; the easiest example to find is advertisements targeted to a female audience – though even those usually contain messages that point women in the direction of pleasing men in some form or other, and conforming to male-dictated standards. Racial diversity is becoming more common in advertising and promotion, but still has a tremendously long way to go. It’s still a huge deal when a homosexual couple or family, particularly one raising children, is shown in advertising.

And here’s where intersectionality becomes important. When advertisers only have 30 seconds to get their message across, they don’t prioritize positivity toward not just women, but transgender women of color with disabilities, just to give one very complex possible example. Even simpler examples, combining only two of these categories, are hard to find in commercials in ways that really matter beyond basic representation (which is a vital step, but not the be-all and end-all).

As a disabled woman, I am constantly presented with “feminist” and “body-positive” ads that show women’s bodies being “amazing,” doing things that I can’t do. I see an ad of a woman running a race or climbing a mountain, and I’m told, “see, your body is incredible.” And the message underlying that, to a disabled woman, is “your body would be incredible, if it could do this; as is, sorry, that kinda sucks.” I am presented with “reasons you know your marriage will last forever,” that consist of “because you do X thing,” that… I haven’t been able to really do in years.

People around me see these messages as well, and it affects their attitude toward me and my body. This contributes to the fact that, when I use a wheelchair, employees at a grocery store tend to talk very! Slowly! And! Loudly! In! Small! Words! As if, because I am in a wheelchair, I can’t understand their speech.

It is very hard to maintain a body-positive attitude about my own body when I am constantly told by society that my body is lesser than other bodies.

Disabled bodies are not lesser than other bodies, any more than darker-skinned bodies are lesser than lighter-skinned bodies, or than female bodies are lesser than male bodies, or transgender bodies are lesser than cisgender bodies, etc.

I’ve seen this discussed in many an article, and most of them stop there. I’m going to continue by giving some positive examples of attitudes and expressions toward a disabled person’s body.

The degree to which I am currently disabled is a relatively recent development, and so it’s something that I’m still getting used to, both as a concept in my head and as a practical living situation. It hasn’t been easy, and I know I haven’t always made it easy for those around me. I have been incredibly lucky to be surrounded by supportive family, both family of blood and family of choice. These people have helped me maintain something of a positive attitude, though it is still a daily struggle for me.

I have friends who tell me I look great when I show up wearing the new outfit I’m excited about, or when I’m dressed up for Renaissance Faire. They don’t focus on what today’s mobility situation might be. They tell me I’m fun to be around, to do things with, and reassure me when I wonder aloud whether my lack of mobility sometimes holds them back from doing things.

I have parents who tell me they’re proud of me, and who are proud to point out ways I look like them.

On the front lines of this fight with me, every day, is my husband. He tells me I’m beautiful, and when I sometimes stare at him incredulously, he insists, “Even though you may not feel it right now, you are beautiful.” He doesn’t let me get away with hating my body. Hating my body is a bad habit that I can fall into easily, and he knows it. His response: “Your body is amazing. I don’t like that it hurts you the way it does, but you have to remember, that’s not all that your body is.” And the best part about hearing this from my husband? It’s not rehearsed or planned. It’s part of his attitude, and I work every day to make it part of mine.

This is such an important insight, that there’s more to our bodies than our health problems, and I believe we don’t hear it enough. Sometimes our bodies screw us over, whether we’re disabled or not. Most of us will, at some point, go through a serious illness or injury of some kind. It feels like a betrayal by our own flesh, and it’s easy to lose the trust that we once had in our bodies, and to lose a sense of ownership, and that positive attitude that can keep us healthy. But those failures of our bodies are just a fraction of what our bodies do. The human body is incredible, and science continues to explore it because we don’t really even know how incredible.

This is true whether or not we’re disabled. I’d like to see this message explored with real inclusivity, in advertisements and articles focused on something other than yoga equipment and New Age enlightenment practices.

Fan Conventions and Disabilities

First, just sharing some of my own experiences.

I have a wide range of convention experience, although I don’t attend them particularly often. I have attended tiny science fiction conventions with fewer than 500 people. I have attended anime conventions with over 30,000. I have attended conventions in cosplay, dressed as myself, dressed formally, as a human chess player on stage, as a program participant, as a featured singer, as nobody in particular. I have been attending conventions for fourteen years now. And it’s been great to see the experience change for a person with limited mobility.

Fourteen years ago, a person who didn’t have to use some kind of external aid every second of every day, couldn’t register at the Special Needs desk of most conventions, because we couldn’t “prove” our disabilities. It was assumed that a walking cane was part of a costume, even if either a)I wasn’t wearing a costume, or b)the character I was cosplaying didn’t use a cane. It was considered acceptable for not only participants but also dealers and convention staff to ask a person with a visible disability to move faster in the dealers’ room at a convention to avoid inconvenience to “the rest of us.” When I got shoved down an escalator at an anime convention ten years ago, it was treated by staff as being my fault because I was in the way of other participants and they had a panel to get to, and I should be walking, not standing, on the escalator.

Much of this has changed. I still hang a small handicapped sign on my cane when I use it, but I am no longer questioned when I walk, unaided, to the special needs desk and ask for a sticker to put on my nametag. There are still thoughtless people with tunnel vision at conventions, but staff now treat incidents such as the one I experienced correctly – as I found out a few years ago at the same anime convention.

It interests me that conduct of participants at conventions of all kinds is progressing faster concerning people with disabilities than it is concerning women. In most circumstances, in my opinion, this is not the case, even inside fandom.

Some tips for the able-bodied, when dealing with persons with disabilities at fan events – because it’s not always obvious how to handle certain situations.

Disabled cosplayers are just like any other kind of cosplayer. Treat them as such. And for gods’ sake, please don’t ask them to put a wheelchair aside for a photo. If they can, they often will. If they don’t do it when the photo is requested, it probably means it’s not possible, so don’t push it.

If you notice that a cosplayer has deliberately worked their aid into their costume (example from my own history: I cosplayed MS Gundam’s Char Aznable as wounded war veteran, since I was using a cane at the time), that’s perfectly okay to comment on.

It is courteous to make sure that someone with a mobility aid gets a seat at the start of events. It is also reasonable to expect that someone with a mobility aid will arrive at or very close to the start of said event, and not walk in at the midpoint and expect a seat. Most conventions actually have a policy that persons with the special needs sticker on their badge are to be given seats within the first five (quantity varies, check your convention’s policy before you go) minutes of any event, but not after that unless you feel moved to do so.

Watch where you’re going in crowded spaces. This should be obvious, but huge numbers of people don’t. You don’t have to treat us as though we’re made of porcelain, but where a fairly basic bump against someone able-bodied isn’t a big deal, it can throw off the balance of someone with a cane because we can’t necessarily catch ourselves. One big example of this which a lot of people don’t follow: do not move directly backward in a dealers’ room; turn around and move forward, then turn again.

Let disabled people have space on the elevator. Some conventions – and some facilities – actually have a policy about this, so check it to make sure you don’t end up in trouble. And once on the elevator, let a person with a mobility aid move to within reach of the edge. If the elevator jerks at the end, it’s important that the person be able to support their balance.

If you see someone acting “different” due to a disability, keep your commentary to yourself, unless you think someone might actually need your help. If I’m walking a little funny, or limping, please don’t draw the attention of everyone nearby to it, thanks. But if I actually fall down, I appreciate the hand up. Especially if escalators are involved.

Be aware that disabled women may be a little more skittish than most women at conventions, and don’t take it personally, just give us a minute to calm down if we’re startled. Almost all women who attend conventions have either experienced or witnessed some sort of harassment, and we’re constantly aware of potential danger. Disabled women are often aware that in dangerous situations, we have metaphorical targets painted on our foreheads.

We’re here for the same reason you are: because we share an interest of some kind. Whether it’s Star Trek or classical literature, we’re here because we love it. In that, we’re just like you. Treat us as such. And if you misstep a little, no biggie. We get that you’re trying. Just try to be understanding, and we’ll return the favor by being as clear and as patient as we can.

Some tips for safety and fun, for people with disabilities when attending fan events – because while it is not our obligation to make ourselves “normal” for others, it is our obligation to take an effort to keep ourselves safe, and be watchful and to be clear about our needs.

That’s a big one: be clear about your needs. If you need something from staff, ask for it. Often staff are volunteers who are there because they share your interest, not because they’re trained disability advocates. They are more than willing to help, but need your guidance to know how. Also, you can’t expect someone to give up their seat to you if you don’t ask for it.

Make it clear with a sign or orange tape or some such that your cane or whatever isn’t part of your costume. Not everyone will know your character, and so not everyone will be able to distinguish someone who is in a wheelchair due to a disability from someone who has borrowed one from a friend for costuming.

Make sure you are noticed. Make noise to let someone know if you’re behind them, if them backing into you would be a problem. Make sure you have something that extends over your head, like a small flag, if you’re in a wheelchair. Have something brightly colored with you or on you. It makes it just that much less likely that someone will crash into you on an escalator (it’s obviously not your fault if someone shoves you down an escalator, just like it wasn’t mine, but it’s so much better if it doesn’t happen at all).

Keep aware of things around you. You know to look both ways before crossing a street. At a convention, you’re always in a street. It may not be a busy street, but it’s at the very least a bike path, and there are potential hazards that you should be on the lookout for. Simple awareness will go a long way to keep you from getting injured.

Have a little patience with your fellow fans. I’m not talking here about the idiots at conventions who say insulting and bigoted things about people with disabilities – I’m talking about people who clearly have no experience with these issues, and may be varying degrees of socially inept, but who are trying, and are nervous about seeming like one of the other group. They’re here because they have interests in common with you, and that should go some way toward drawing you together. Our culture is a precious thing, and it’s worth a little patience.