The bizarre world of body dysphoria

I have found it quite difficult explaining body dysphoria to people who have never had the misfortune of experiencing it firsthand. It often seems a bit like trying to explain colors to someone who has never been able to see. How do you really explain to someone that parts of your body feel foreign and wrong and that it feels like other parts are missing?

Ever since puberty, I spent at least some part of every single day in distress about my breasts. Over the years I tried various ways of making peace with them, trying to at least be okay with their presence even if I couldn’t get myself to like them. Nothing ever worked, and it seemed the harder I tried, the worse the dysphoria became. It was a constant anxiety. It was worst when out in public, but the anxiety was always present, even when I was alone. When I was around other people, the part of me that was constantly aware of my breasts was always trying to minimize or hide them. They felt like alien growths that didn’t belong to my body. While I did not come to the understanding of being trans until just a couple of years ago, I always felt like people would not be able to see me for who I was because of the breasts. This feeling finally made sense when I realized I am trans. I did get some sense of relief when making the decision to transition knowing that I would finally be able to get rid of the breasts once and for all. When I made that decision, I did not realize just what a profound impact it would have on my life.

It has been nine months since top surgery and the change that this has had on my quality of life has been nothing short of phenomenal. The constant anxiety over my chest is now gone.  I can finally wear shirts that actually fit instead of ones that are 1-2 sizes too big to hide the breasts. I even wore a tank top out in public last weekend for the first time in years and never once had anxiety about how my chest looked. My chest is not perfect. I have scars and will need at least one revision to fix the excess skin under my arms and to move my nipples down a bit. But those issues are minor in comparison to the feeling that my chest was alien to me.

Some people have tried to understand the trans experience of having a ‘wrong’ body by comparing it with typical complaints many of us have about things we don’t like or that we’d like to change about our bodies: things like being overweight or wanting the “perfect” <insert body part here>. But wanting the perfect body part is much, much different than believing the body part does not belong on your body at all. Because I now have a few things that need to be changed about my chest, I can better understand just how different these two experiences are. There is minor anxiety around wanting to fix the imperfections in my chest. But the internal experience is not at all like the experience of feeling like my breasts didn’t belong there. My chest is mine now, even as imperfect as it is. It’s the chest I was always supposed to have to be congruous with the internal image of myself. My outward experience has also shifted. If I were to go to the gym and change in the dressing room, I would have some discomfort about showing my bare chest because of the scarring, but I wouldn’t feel like I couldn’t be seen as myself. It would be the difference between feeling embarrassment and feeling invisible.

Every trans person has struggled to explain the experience of body dysphoria to those who are not trans.  The thought that a person would feel like part of their body did not belong to them is so foreign to most people that they have no frame of reference to even contemplate such an experience. Attempts to create a frame of reference by comparing it to the desire for some way to make an existing body part “better” don’t really get to the essence of what body dysphoria is. Medical science has come a long way in the past 10 years, and studies are starting to show how our brain has its own internal body map. For a trans person, the brain’s innate body map does not match the physical reality of the body, and this is where the dysphoria comes from. This is how a person can feel like a healthy part of their body does not belong to them or how they can feel like their body is missing parts that their brain says should be there. For cisgender people, the brain’s map of the body is congruous with the physicality of the body. Cis people may not always like everything about the body they have, but their brain isn’t telling them that parts of their body don’t match what it expects to be there. My experiences of my body before and after top surgery have given me some new insights into how different these frames of reference are from each other and why trying to use the frame of reference of “improving” a body part is so inadequate to explain body dysphoria.

Top surgery has not eliminated all of my body dysphora. To feel completely comfortable in my body I will eventually have to seek changes to my genitalia, but that discussion will require another post of its own.

A long overdue update

It has been way too long since I have written a post here. I have spent the past 8-9 months fighting with my body in one way or another. Some of it related to my transition and some related to having arthritis in my knees. Last September I injured my left knee running for a bus as I was headed to work. Recovering from the knee injury in addition to recovering from top surgery would have been enough for me to be getting on with, but I also had to switch to a different formulation of my hormone therapy. In the US I was on 150mg of testosterone cypionate injected once a week. Not knowing how long it would take me to get trans care in the Swedish medical system, I brought almost a year’s supply of T with me when I moved. Once in the system I found out that testosterone cypionate is not available here. The only T available here is something called Nebido, which is a long release injection designed to last 12 weeks. Whether it was a language failing in understanding time schedules on my part or a failing in setting the time schedule on the part of the endocrinologist, I ended up on the wrong shot schedule when I switched. Even though Nebido is supposed to be a 12 week cycle, there is a ramp up time, so your second shot is actually supposed to come 6 weeks after the first. Because I was already on T, I guess the endo didn’t think I would need the extra ramp up time and scheduled my second shot for 12 weeks. In an unfortunate happenstance of timing, I ended up hitting a low in my T levels at about the same time I was hitting a depressive cycle from the top surgery anesthesia. I had been warned about the depression that could come after surgery so I didn’t know that part of the problem was that my T levels were too low.  A month after surgery I had my next injection. I started feeling better but still hadn’t put it together that it was my T levels causing problems. It wasn’t until 2 months later in the beginning of February that I started to realize something was really wrong when I began to experience severe depression that couldn’t be explained by life events. On the outside life was great. I was healing well from surgery and I had a wonderful freedom from a constant source of suffering for the first time since puberty. I had an awesome marriage to a beautiful woman. I had a good job where I was well liked and respected. But internally I was struggling to find a reason to keep going. It was maddening. I had felt this kind of depression before when I would have a particularly difficult monthly cycle so it finally dawned on me that my hormone levels were off. I tried to stick to the 12 week schedule but finally broke down and took my T shot early in hopes that it would relieve some of the depression. I was right and the shot did help, so I scheduled an appointment with the endocrinologist. The first endo I saw had moved to a different hospital so I ended up seeing a different doctor. She was the one who explained that I was supposed to have ramped up on the Nebido, even already being on T. She tested my T levels at 8 weeks and found that they were already getting low so she reset my shot schedule to every 8 weeks instead of every 12. I have been doing better, but I still feel like my levels are getting lower earlier than they should be. I have decided not to try to have the schedule changed until after my hysterectomy though. The hysto will alter my hormone levels anyway, so it will be easier to get things adjusted once that is done. I don’t yet have a date for the surgery, but I have completed the pre-op appointments and am just waiting for the surgery department to set the date. They are doing this one using a robot assist and the robot is typically scheduled for more urgent cases in the summer months. The doctors expect that I will be given a surgery date sometime early fall. Hopefully in September.

Through all of this I have also been dealing with arthritis as well as a knee injury. I went through a few months of physical therapy designed to help strengthen the injured knee and to help with the arthritis. I have been on an exercise routine with a stationary bike that is helping and a couple of weeks ago I started back on my weight lifting routine for upper body workouts. I am feeling stronger with less pain and have even lost 3kg  (6.5 lbs) in the last month.

It has been a long haul dealing with the physical pain of recovery while going through repeated cycles of soul crushing depression, but things are finally calming down now that I am on a better T cycle and have a consistent exercise routine. Life is finally starting to get back to something resembling normal, so I hope to be writing on a more regular basis. Feeling more like myself again should help.

Surgery and recovery

My surgery went as scheduled three weeks ago today. The surgery itself went well despite running longer than expected leaving my poor wife and mother a bit panicked when I was 2 hours overdue before they heard about my successful outcome. My surgery was scheduled for 1:00 and it was probably about 1:30-1:45 before they got started. I had originally told my mom it should take about 2 hours with some time in recovery so she was expecting to hear something by around 3:30 or 4 Stockholm time (she is in Seattle so was waiting for a call from my wife about my status). When I went into surgery, my wife asked the nurse when she should be back to meet me out of recovery and the nurse told her to be back around 4. Wanting to make sure she did not miss me, she stationed herself on the bench outside the elevators around 3:00.

When I woke in the recovery room, I had been having a bad dream and was quite started when the nurses tried to rouse me. I couldn’t remember the dream but was so startled that I cried out and attempted to get up, much to the nurses surprise. The sudden motion of trying to get up made me instantly aware of the searing post-op pain in my chest. The nurses started me on a heavy duty pain killer. I don’t know what they had me on, but they had to keep reminding me to breathe because it suppressed the body’s natural breathing reflex. I was still very groggy from the anesthesia and it was difficult to stay awake, but every time I would start to fall asleep I could feel myself stop breathing. It would jolt me awake and I would take a deep breath and struggle to remain conscious. When I first woke up I was able to make out from the clock on the wall that it was about 5:20. I knew I was overdue, but was too out of it to ask if someone had told my wife that I was out of surgery. Finally about 6:00 I had regained enough cognitive ability to ask the nurse if someone had informed my wife. The nurse asked if my wife was in the building and if she had a cell phone, which I answered yes to both questions. The nurse then brought me a phone to let me call her. She was ecstatic to hear from me and astonished that I could remember her phone number. I am still amazed that I remembered her cell phone number since it was a fairly new number and I usually didn’t have to dial it as it’s programmed into my phone. Just after my call, my wife called my mom to let her know that the surgery went well and I had come through just fine. I am sure my mom was beyond relieved to get the call. She was getting very panicked as it got later and later with  no news.

The nurses in the recovery room continued to give me pain medication every 10-15 minutes and told me I would not be able to go back downstairs until my pain levels were under a 4 on a 0-10 scale. I started out around level 8 when I woke from surgery and it wasn’t until about 7pm that I was finally down to a 3.5 to 4. Once my pain levels were down, they wheeled me downstairs. My wife met me as they wheeled my bed off the elevator and down the hall to my place in the room on the surgical ward. She was even more surprised at my ability to call her when she finally saw me and saw just how hard it was for me to stay awake.  I spent the rest of the evening sleeping. As much as I wanted to be up to tell my wife about everything I just couldn’t stay awake. I barely remember her kissing me goodnight and heading off home. Just after she left the nurse got me up to use the bathroom. I was so nauseous from the pain medication that once I got into the bathroom I was sure I would throw up. Luckily I didn’t though. When I got back into bed I told the nurse of my nausea and they started giving me on an anti nausea medication every time they gave me the pain meds. The night nurse woke me every couple of hours to give me morphine and check up on the incisions. At one point in the middle of the night she became quite concerned about my right side. She hurried off and came back with an IV of something. I never did find out exactly what it was she gave me, but I assumed it was something to try to prevent infection.

I woke around 4:30 Friday morning and couldn’t get back to sleep, partly because the room I was in had 2 other guys who were snoring very loudly and a third guy who was in some intestinal distress as he kept going to the bathroom every couple of hours. Around 6:30 the nurse let me know that the doctors would be in at 7:30 to do a post op check. I messaged my wife that the docs would be coming in and she rushed to the hospital in time to meet with the doctors as they took a look at their work. Both were quite pleased with the results. I had some extra puffiness on the right side, but overall things looked pretty good. Later that morning they removed my drains. I had been having a lot of pain from the drain on the left side and when they went to remove it I found out why. While I was in the recovery room the nurses had to move me up in the bed. As they did so, I had a searing pain on my left side for a moment and then continued to have pain if I moved wrong. When they went to remove the drain they found that the stitch holding the drain had been ripped out. Once the drains were out, I was able to get dressed and was released to go home with a follow up appointment for the following Friday.

My wife was adamant that we get a taxi home instead of trying to go by public transport. I found out from the nurse that we were able to get a reduced fare taxi home. We had a bit of an ordeal getting the taxi though. We thought we knew where we were supposed to wait, but 20 minutes past when we were supposed to be picked up we found out we were waiting at the wrong door. The nurses called us a second taxi and made sure we knew where to meet it. We were crammed in with 2 other people on our way home to which my wife commented that it perfectly represents socialized health care: crowded and late but you don’t have to pay for it. Once we got home I phoned my mom to give her an update and spent the rest of the day sleeping. Through the first week I seemed to be healing up fairly well. I was still very tired all the time and sleeping as much as I could, but it felt like I was slowly healing. I went into my first post op and they said things looked good overall. There was some redness around some of the incisions that the nurse was concerned about and said I should keep an eye on it in case of infection. Sure enough, three days later I was getting up one evening and had a gush of fluid come out the incision on the left side. I was able to get back into the doctor’s office the next day and found out I had contracted an infection. I was prescribed the antibiotic flucloxacillin and told to start taking it as soon as possible, preferably right after going to the pharmacy. On the way home from the doctor’s office I could tell I was starting to run a fever. Once I got home I was in full blown chills. My wife tucked me into bed with some extra blankets and I went to sleep. My fever broke in the middle of the night and luckily did not recur. The infection greatly increased my pain levels and my overall feeling of exhaustion. My pain medication was prescribed for every 6 hours. The first week I was able to go sometimes 8-10 hours before needing another dose, but once the infection set in I was getting breakthrough pain after 4-5 hours. Even though I was exhausted, the higher pain levels made it harder to sleep. I started feeling a bit better a few days after starting on the antibiotic but it took a little over a week before I really started feeling like myself again.

It has been a rough three weeks, but I can say without hesitation and without question that it has all been worth it. Now that I am coming out of the anesthesia/pain med haze I will be able to write more about what life without the breasts has been like aside from the medical complications. But that will need to be a post of it’s own, which I hope to write in the next couple of days.

Waiting for “Christmas”

I was originally scheduled to go into surgery today. I had been waiting for what felt like forever, watching my countdown clock tick off the days to my surgery date. I woke last week Monday with the excitement of knowing I had finally gotten to single digits. It was 9 days to my surgery date. Sometime mid morning I received a call from the hospital. A nice woman was tasked with giving me the bad news that my surgery date had to be rescheduled due to the hospital needing to close one of the operating rooms for some reason unknown to me. The soonest available date was November 3rd.

Ever since I got my surgery date back in late July, I knew that there was a possibility that it could be changed. My initial appointment with my endocrinologist was changed 3 times. It’s just something you have to deal with when you have a socialized medical system. Appointments are prioritized based on needs instead of on ability to pay. I certainly wouldn’t change that part of the system, but it means that occasionally I have to deal with appointments getting moved. I had hoped that since surgery is a much more involved process it might mean that there was less of a chance of it getting moved. I do believe that is usually the case, based on the apologetic wording used in the confirmation letter I was sent after agreeing to the November 3rd date.

My rational mind was fine with the change. I went through and listed all of the rational reasons why this would be alright despite the disappointment. But feelings aren’t rational, no matter how much I try to force them to be so. Somewhere deep down I felt like a 6 year old boy who was just told he had to wait an extra 2 weeks for Christmas this year. I keep telling myself that in the grand scheme of things, 2 weeks will seem insignificant, but no amount of rationalizing has made me feel much better about it. Today should have been one of the happiest days of my life, but now my countdown clock says that day is still 13 days away. At least Sims 3 Pets comes out here today. I will be able to lose myself for awhile in Sims land while I wait 2 more weeks for “Christmas.”

Eating our own

I have spent the past few weeks struggling to get this post completed. It has been difficult for me to form my thoughts and feelings into words when dealing with such emotionally charged issues.  I have spent a lot of time lately thinking about the infighting I have seen within the trans community. I know that every community has to deal with some infighting. We are, after all, only human and no matter what the topic, people are going to have strong feelings about their opinions. But in the trans community there seems to be an inordinate amount of eating our own.

It is often said that those who are abused are at greater risk to become abusers themselves. So what happens when the lowest group on the social ladder is marginalized and abused? There isn’t anyone else on whom to take out our anger, so we fracture our community into further sub-classes and abuse each other.

One of the starkest dividing lines is between those who are pre-op and those who are post-op, as if it’s the surgery that makes a person a man or a woman. This is in reference to the surgical procedures known as Sexual Reassignment Surgery (SRS) or Gender Reassignment Surgery (GRS). The surgery is a physical correction needed for some transsexuals to align the body with a gender already present in the brain. But these surgeries are not necessary for every trans person. There are some whose body dysphoria is so great that it is difficult for them to function in a body that does not match what their brain expects. I fall into this category, so surgery for me is necessary. But I know others for whom SRS/GRS surgeries are not necessary to feel comfortable with their body.  There are still others who need surgeries but cannot get them due to cost factors or medical complications that make the surgeries impossible. This is one of the reasons that requiring SRS/GRS in order to obtain corrected legal ID documents or anti-discrimination protections is such a harmful practice. It would exclude a great number of people who are unable to get these surgeries due to a lack of medical/financial resources or contraindications for surgery. It would also force those who are comfortable enough with their bodies into invasive and unnecessary surgeries that actually have the potential to increase their body dysphoria.

There are those who are afraid that if we allow surgeries, then surgery will become mandatory for every person. On the other side there are those who are afraid that if we do not make surgeries mandatory, then surgeries will be considered optional and will become harder to get for those who need them. This black and white, all or nothing, fundamentalist-type thinking only works to divide us and will guarantee that none of us will get what we need. There IS a middle ground, and it is the same approach that ought to be used for every other medical decision made in every medical facility all over the world. A doctor treating a patient tailors the care of that patient based on the needs of the individual. Every individual is unique, and there is no one-size-fits-all treatment in standard health care. We should not be advocating for such treatment in trans care either.

While the dividing line on surgery is an issue that brings up a lot of heated discussions within the trans community, there is another dividing line that often does not get discussed. It is the dividing line on “passing.” I really hate the term “passing.” To me, it implies a deception to “pass” myself off as something I am not. I am transitioning to become my true self, not to deceive others into believing some false identity. If anything, I “passed” perfectly well as a woman, even though that is not who I am or who I have ever been. I recently read an incredible article on this subject on the Transadvocate’s website. The article is titled On “Passing” written by Dr Cary Gabriel Costello. I highly recommend it. One of the things he talks about is how the push to “pass” is driven by cissexism. Here is a quote from the article that I want to elaborate on further.

“To think of a trans man as a “fake” man is the essence of cissexism. This is why every time I listen to one of the many people I’ve met who are afraid to transition cry, “I can’t—I’ll never be able to pass as a man/woman,” I sigh, because I know that the real battle they face is not their bodily structure, but their internalized cissexism, which tells them they don’t have the right to claim their true gender identities because their bodies trump their inner truth. Cissexism holds that appearance is all, and that trans people who don’t conform to binary sex ideals are fakes, freaks who deserve to be mocked and harassed. As if cis men never looked down at their bodies to find themselves short, or sporting moobs, or sparsely haired. As if cis women were never tall or flat-chested or strong. As if people were never born intersex, like me.”

Trans people are held up to an impossible standard by a cissexist, transphobic world. We are placed in the impossible situation such that if we do not conform to every stereotype of our affirmed gender after transition, we are decried as “fake” for not looking and acting like “real” men or women. Yet at the same time, if we do conform to gender stereotypes we are decried as “fake” for looking and acting like stereotypes. It’s the perfect catch 22. But the sad part is that the trans community has those within it who would use these kinds of arguments against other trans people. In a desperate attempt for some small measure of legitimacy in the eyes of the greater society, they have adopted the language of their oppressors to use against those whom they view as “less than” or “freaks.”

Those with more privilege tend to distance themselves from those with less. Those with “passing” privileges tend to distance themselves from those who can’t “pass.” We draw arbitrary lines in the sand in an attempt to categorize who is worthy of certain labels or legal protections and who isn’t. But while we are busy arguing and nit picking amongst ourselves over who is “true” or “authentic,” those who oppress us not only do not see our differences, they don’t care. They don’t care how you identify or what surgeries you’ve had. They don’t care if you can “pass” because if they ever find out you are trans (or a “person with a medical history” if you don’t identify as any type of trans), your “passing” privilege goes out the window.  To them, we are all the same. We are all deviants. We are all freaks. At least until one of them actually gets to know a trans person and sees how we are not so very different than they are after all. We are humans trying to find our way in this world. We were just given a few extra obstacles to overcome. Once that acceptance begins to grow, we are no longer seen as a label, but as a person and potentially a friend.  As each person better recognizes the common humanity in another, our differences no longer have to divide us.

If those who are not trans are able to support us as individuals, I think we owe it to ourselves and the rest of the trans community to support each other as individuals, each with unique needs and challenges. We are defined by our own declarations of who we are, not by a set of medical procedures. It’s time for each one of us to take a long look at ourselves in the mirror and admit our own bigotry and prejudice towards those whom we see as “other.” Then take time to get to know someone from a different side of  the dividing lines. Take time to understand their decisions of identity and their fears of erasure. Explain to them your own. Find some common ground and then start to work together towards a better world for us all. How can we expect the rest of the world to listen and accept us if we can’t even do that for each other?