In August 2006, a friend was taking photos of me for use on my website and for promotion and such. During the photo-shoot, she asked a series of seemingly random questions that were meant to keep me relax and acting natural while I was being photographed. One of those questions was, “What is your favorite part of your body?” It really struck me, because no one had ever asked me that question before. And, almost without hesitation, I answered: “My skin.”
Way back during my physical transition, among the plethora of bodily changes that were taking place, the change in my skin was most profound for me. While some trans folks focus on some of the more prominent or symbolic changes, I marveled at my skin – the change in texture and appearance, how my face blossomed into a mess of freckles. I remember waking up mornings during that time, and my hand would just so happen to be touching my arm, or my leg, or face, and it would just feel right.
I suppose that it’s a cliché to say that trans folks finally feel “comfortable in our own skins” post-transition. Well for me, I experienced that phrase quite literally.II.
Nowadays, when I look at the photos that were taken of me on that August day four years ago, I notice my skin and all those freckles, but mostly my attention is drawn toward a small red blemish on my right cheek. I remember having first noticed the blemish a month before that photo-shoot, during a hectic month in which my partner at the time and I were in the process of moving for the fifth time in seven years (that is a long story in and of itself). Anyway, at first I thought the blemish was a zit, but it didn’t go away. My bird Buddy, who spends much of her time perched on my shoulder, kept trying to pick at it. I kept telling myself that I should go to the doctor to have it checked out, but I was so busy packing and unpacking, and working hard to make my end-of-the-year book manuscript deadline, that I viewed the blemish as a relatively low priority.
That changed one September day, when I noticed a little blood vessel adjacent to the red blemish. As a biologist, I am aware that tumors often recruit blood vessels, so I immediately became concerned that it might actually be cancerous. Unfortunately, I was right. What followed was a year-long ordeal during which I had a 3 square-centimeter chunk of my cheek removed, as well as two plastic surgeries to try to fix the hole that was left behind. (I described this in slightly more detail in a previous post
These days, when I look at pictures from that August, 2006 photo-shoot, I can’t help but notice how my face has changed since then. First, I have a significant scar on my right cheek from those cancer-related surgeries. Some people tell me that you can hardly notice it. But I’ve also had people ask me outright “How did you get that scar on your face?” So I have to believe that it is fairly obvious. Even if others overlook it, it sure is noticeable to me.
And when I compare the face that appears in those old photos to the one starring back at me in the mirror now, it is striking how less freckly I am these days. This is an indirect effect of having had skin cancer, as in the years that have followed I have religiously worn sunscreen and large brimmed hats in order to reduce my exposure to the sun. The less sun exposure, the less freckles. I really liked my freckles, so it’s been kind of sad to no longer have as many.
But more than sadness, when I look back on pictures from that photo-shoot, I am filled with a profound sense of irony. On that August day when I declared that my skin was my favorite part of my body, little did I know that some of my skin cells were revolting against me, and that I would need to lose a big chunk of mostly healthy skin tissue in order to save the rest of my body from those renegade skin cells.III.
I have been thinking quite a lot about my skin over the last two months. In fact, it has, once again, become my primary preoccupation. I have recently been diagnosed as having psoriasis, which is a chronic auto-immune condition that affects the skin. It is one of those conditions that no one fully understands, but many researchers believe that it occurs when the body mistakes healthy skin for wounded skin. Basically, what happens is that immune cells move into the epidermis and secrete factors that both cause inflammation and signal to the surrounding tissue to make new skin cells. Then, when these new skin cells arrive at the surface of the skin (where they are not actually needed), they die, resulting in what are called “plaques,” which appear at the skin’s surface. In addition to these plaques, the skin becomes very thick, red, inflamed and incredibly itchy.
Anyway, like I said, it is a chronic, life-long condition that, like many auto-immune conditions, may be dormant for periods, and then suddenly become more intense for one reason or another, often in response to stress or environmental factors. Although I was unaware of it at the time, in retrospect, I believe that I had a very mild flair-up of psoriasis during my twenties, primarily on my scalp (which is one of the more common places for it to develop) and my ears. At the time, I thought it was just a dandruff problem (a common presumption), and I battled it with dandruff shampoos. Around the age of thirty, it just seemed to go away, and I haven’t thought much about it since.
A few months ago, out of the blue, it started coming back. In September, I had my biannual full-body skin exam with my dermatologist. Normally, the focus of the exam is on potential skin cancer recurrences - luckily there were none. But this time, she found that the skin on my scalp was irritated. It was fairly mild at that point, so she suspected that it was just a case of dermatitus, which tends to be temporary and is usually less serious.
Over the next two months however, it only got worse. Upon close inspection, it became obvious that my entire scalp was extremely red and I could see plaques all over. I switched over to dandruff shampoos and conditioners, which had worked for me in the past, but they did not help at all. Eventually it became unbearable - my scalp itched incessantly and was a constant source of pain. So I went back to my dermatologist, and she said it was definitely psoriasis.
For the last month or so, I’ve been on a rigorous treatment regime, involving topical medications, medicated shampoos, and a once a week soaking-my-head-in-oil treatment to facilitate plaque removal. My scalp psoriasis has definitely subsided a bit, but has certainly not gone away. In addition, I have experienced a couple small outbreaks on other parts of my body, specifically on my arms and torso. The fact that it has started spreading to other parts of my body has really worried me, as it implies that my condition is getting worse rather than better. In people who have more severe cases, psoriasis can cover large swaths of the body. My grandmother had psoriasis, and it covered much of her legs. (Other relatives on her side of the family had it as well; it tends to run in families.) I am nowhere near that point, but the fear that my psoriasis may be becoming more widespread and severe is a constant source of concern. Some mornings I wake up and see lots of tiny, red, dry patches on my arms, which I have come to recognize as the first signs of flair ups. If I ignore them, they get larger and itchier. I can usually prevent this from happening by dousing them in lotion 4-5 times a day. Occasionally a patch or two will continue to grow, in which case I need to treat it with medication.
Unfortunately, there is no cure for psoriasis, only management of the condition. In addition to the treatments I am undertaking, I have also tried to increase my vitamin D levels and to get more sun. Apparently, the ultraviolet radiation in sunlight can signal the skin cells to stop dividing aberrantly. The irony has not been lost on me: After hiding from the sun for the last four years for fear of another incident of skin cancer, I am now actively seeking out sunlight (albeit in moderation). This has been a little difficult to achieve, as here in the Bay Area we tend to have very overcast and rainy winters. But at least we don’t have dry winters like much of the country, as this can really exacerbate the condition. Many people experience their biggest psoriasis flair ups in the winter, both because of the dryness and the sharp reduction in sunlight.
My dermatologist says that the treatments I am on, while topical, are quite strong. (Actually, I am alternating between a strong medicine and a more mild medicine every two weeks). If the topical medications fail to keep the condition in check, the fallback position (from a medical perspective) would be going on immunosuppressants. Apparently, they significantly ease psoriasis symptoms, but they have the considerable drawback of...well, being immunosuppressants. Needless to say, that is a path that I would only ever consider if absolutely necessary.
Anyway, I find myself dealing with this new development in my life on two different levels. First, there is my immediate having to deal with the changes in my body and my daily routine. Between the various treatments, making a point of getting some sun, constantly surveying my body and applying lotion, and so forth, a significant chunk of each day has become dedicated to dealing with psoriasis. Furthermore, as with most auto-immune conditions, stress is thought to exacerbate psoriasis, so I have been making a point of not pushing myself too much, and of getting a minimum of 8 hours of sleep per night. This has really cut into my writing time (which has traditionally taken place early in the mornings before I head off for my day job) and other projects and chores have fallen by the wayside as well. I am hoping that this is a temporary phase, and that I will be able to resume my old schedule when/if my psoriasis goes back into remission. But of course, there are no guarantees that this will happen.
Psoriasis has also affected my quality of life in other ways, the most obvious of which is how uncomfortable the condition is. While the medication has helped a lot, my scalp is still red and inflamed and itchy a lot of the time. I liken my situation to having a minor cold: Because it is not too severe, you can go into work and get stuff done, but at the same time, you feel yucky all the time, and you are worried about exerting yourself too much for fear of the condition getting worse. It is a constant, low-level uncomfortability and cause for concern in my life; it is frustrating, but manageable.
The fact that my psoriasis is concentrated on my scalp has also touched a bit on my trans issues, specifically regarding my hair. First off, when I do my once a week oil treatment to remove plaques, I always lose lots and lots of hair - more hair that I have ever lost at one time in my life. This is most likely a temporary situation: as the plaques disappear they often take hair with them, but they usually do not affect that ability of the hair follicles to make new hair (which is what happens in actual baldness). The hair loss is probably not noticeable to anyone but me, but as a trans woman who was starting to experience male pattern baldness in the couple years just prior to my transition, the whole episode has been somewhat triggering.
In addition, I am only suppose to shampoo 2-3 times a week now, and some of the topical treatments have left my hair pretty yucky and unmanageable. Since my hair is long, I can just put it in a ponytail, which is no big deal. But the main problem is my bangs. I have a really high hairline (as a result of my previously mentioned flirtation with male pattern baldness) that is normally not very visible because of my bangs. But when my bangs don’t behave, my hairline becomes fairly obvious. In the last two weeks, I’ve had a couple instances where it seemed like strangers were either misgendering me or trying to figure out my gender. Granted, I’ve had many incidents like these in my life thus far (albeit mostly before and during my transition), and I can handle them just fine. But nevertheless, it is still a frustrating thing to have to deal with.
Anyway, those are the short-term issues that are foremost in my mind. Underneath all that, I am also trying to come to terms with the admittedly more nebulous long-term ramifications of having psoriasis. Like I said, my immediate goal is to work toward remission, but this may not be achievable. Many people deal with their psoriasis symptoms for decades without respite. And many times symptoms only get worse with time, not better. According to one paper that I read, the condition eventually becomes debilitating in 25% of people who have psoriasis. This may be due to the severity of the skin condition, or to the fact that some people who have psoriasis additionally develop psoriatic arthritis over time.
So while I am cautiously optimistic about my psoriasis going back into remission, I am also trying to come to terms with the fact that this is a chronic incurable condition that could potentially (although not necessarily) become debilitating at some point. To be honest, this was difficult to deal with at first. I just came out of a fairly traumatic last few years
, and I was really hoping to have a relatively uneventful year (or two or three) with no significant obstacles or losses in my life to deal with. So when I first learned that I had this condition, I initially experienced flashes of anger and sadness.
But over time, this news has started to settle into my psyche. It has become just another part of who I am. I survived growing up trans in a transphobic world. I survived skin cancer. And I will survive psoriasis. As with all of those previous obstacles, I am working hard to control the few variables that I can control, and to let go of everything that is beyond my control. And I am trying to focus on all the things in my life that I am grateful for, rather than dwelling on the negative. Back when I was an isolated pre-teen and teen coming to terms with the fact that I was trans, I spent several years stuck on the question “why me?” I eventually realized that that was a completely pointless, unanswerable question, one that simply consumed my consciousness and prevented me from moving forward with my life. I soon learned that the more relevant and productive question to ask is: “So what do I do now?”
Back when I had skin cancer, I couldn’t shake the feeling that those cancer cells were consuming me, like a parasite or plague. At one point, I completely disavowed my right cheek - I wouldn’t even touch it - because I knew that the cancerous cells that had taken over there were no longer a part of me. They were my enemy, intent on destroying me, and I desperately wanted them to be gone from my body.
A friend recently asked me if that’s how psoriasis feels. Do I feel as though my body is being consumed by psoriasis? Do I find myself disavowing my psoriatic skin lesions? My answer to that is an unequivocal “no.” With skin cancer, a small cluster of out-of-control skin cells were growing without regard to the health and well being of the rest of my body. Psoriasis is sort of the reverse situation: it is my immune system that is attacking my otherwise healthy skin tissue. In a way, it feels as though my body is betraying my skin, sending out immune signals to sabotage it. Rather than disavowing my skin, I feel really bad for my skin, and I want to make it better. And I desperately wish that I could convince my immune system to simply leave my skin alone.
In a way, all these thoughts are rather silly. My brain, and my skin, and my immune system, and the rest of my body, are all connected. We are all me. It is pointless to anthropomorphize my individual body parts and to pit them against one another. Just as it is pointless to declare that one part of my body is my favorite, when in reality, I need all of the individual parts to work together in order to exist.
Four years ago, I declared that my skin was my favorite part of my body. In the intervening years, the two major unexpected health issues that I have had to deal with have both involved my skin. On the surface, this might seem ironic. But I no longer see it that way. The older I get, the more that I find myself coming to terms with the fact that I am one body - a body that is both strong and susceptible; a body that is healthy and fully functioning in some ways, yet vulnerable and less functional in others; a body that I take for granted in many aspects, but which occasionally bestows me with obstacles, difficulties and challenges. I love my body, and at the same time, sometimes I am extremely frustrated by it. This might seem “contradictory” or “ironic” to some people. But I am becoming increasingly aware that having these mixed feelings is simply apart of what it means to be living.