Archive | July 2012

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.

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