Beyond The Surface
A reflection on psoriasis
Connect the dots (on my skin)
The day I stopped recognizing my own body I stood in front of the mirror, looked at my reflection, and didn’t see what I was used to through all my life. My sight blurred at first, I strained it too much, trying to focus on the anomalies that appeared overnight, little red vibrant dots, almost luminous.
Touch came next. I ran my fingers all over the unknown surface, which was scaly, cracked. The skin was covered by red patches with an itchy and dry texture. In some parts, they looked like drops; in others, they were so close to one another that they formed a singular patch.
At first, I thought it was some rash caused by an allergy or contact with an animal; but I was far from imagining those red dots could be something more serious, and that soon they’d become bigger patches that would take more space than I would have liked to give them.
It was Guttate psoriasis, one of the many types of the disease, unknown to me until it appeared in my body. This kind is commonly found in children and young adults, for about two or three months until it goes away “spontaneously”, as I read on a web page. That’s what Google or medicine textbooks say, but in my experience, it doesn’t go away easily; on the contrary, it’s a long process in which the mind and body must find balance and nurture a harmonic relationship to get better.
This type of psoriasis is named this way because the spots are drop-shaped, and are small, like dots. In some cases, with time, more rashes can arise, resulting in Plaque psoriasis. This type is characterized by raised skin patches, which are so close to one another that they form a wide plaque, covered with scales. This is what happened to me. It can reappear at any moment of the person’s life, due to its being a chronic condition. It’s also hereditary: there must be a certain genetic disposition in a specific body so the possibility of psoriasis can even begin to exist.
It’s not contagious, although the first reaction from people who don’t have it might be to walk away and avoid touching me, they are afraid of having their bodies deteriorated like that, their skins in such a repulsive state.
Another of its characteristics is that it is an autoimmune disease: this means that it’s our immune system “attacking” healthy skin cells, instead of the real threat that invades the body, whether it is a virus, bacteria, or skin lesions.
What I’m trying to do here is simplify something more complicated, with lots of different factors that can trigger an outbreak. The person affected might never know which for sure, from all those elements in the game, triggered the disease. From my experience, it’s difficult to attribute it to only one factor, it was more like a combination of many. Before my first outbreak, I had a big fight with a close friend, I got strep throat and, I had just got back from a trip in Brazil, so I went from summer to winter in just a few hours. It was an abrupt change. All these facts are common causes for an outbreak: stress, infections, lack of vitamin D, and sudden temperature changes. Yes, I had the genetic predisposition for it, but some people have it and never develop a rash.
It’s tough to mark off a specific cause, I didn’t know it back then nor now. Doctors couldn’t safely tell me either: they all pointed out different causes for my outbreak. At times, I took refuge in the thought that psoriasis was a game of chance, like dice, and that there wasn’t anything I could have done to prevent it. Nonetheless, with time I learned that the disease works in a much more complex way. In my case, it was my body talking to me, screaming, begging me to stop for a second, go over my relationships, and have a deep breath. Take better care of myself.
Bureaucracy
The first thing I did after seeing the rash was to question myself, I wanted to find the reason why it appeared. Was I allergic to something? Did I have contact with anything that could have caused it? Did I get a disease from someone I had been with? Possibilities were infinite.
I tried to make a chronology of the days before the outbreak, but this didn’t help me, I got caught up in minor details, forgot parts, and exaggerated others. This way of thinking led to intense anxiety and to feeling exhausted all the time, with my head about to explode.
The only thing I could think of were the patches growing on my skin. I kept seeing them, so big, red, and harsh. They were impossible to ignore. I felt shame. Disgust. Guilt. It had been my fault that they appeared, and now it was my responsibility to make them go away.
There were times when I preferred to blame the person with whom I had had a fight, the strep, or any situation, as little as it was, that had stressed me: it was the simplest answer. That way, I didn’t have to take care of it.
I’m only now realizing just how little sense doing that had, it wasn’t anybody’s fault: it was a genetic matter, mixed with some emotional factors and pure chance.
My dad kept telling me, almost like a mantra, “You must worry about the things that affect you and that you can change, not the ones that are outside your control zone. Those, you must accept and let go.”
I went to my first medical consultation. I walked into the doctor’s office, did all the necessary documentation, and waited. I leafed through a magazine; the only thing I saw were models with their porcelain skin, which only reminded me of how my own had been usurped.
When the doctor finally called me in, he did a quick survey of my patches, and then a dermatology textbook appeared.
Diagnosis: allergic reaction. To what, he never said.
To me, it seemed like a process of elimination: it wasn’t chickenpox because the patches didn’t match, neither an ordinary rash nor warts.
I felt delighted when the dermatology textbook made its appearance, I thought maybe my patches were important enough that a group of people dedicated their time to investigating and writing about them. But it seemed like my rash was a gap in the lexicon. Psoriasis wasn’t mentioned that day, not even as a far possibility to keep in mind. My body and I didn’t have any relevance.
I left with an antihistamine prescription, for the itching. Side effect: sleepiness. Days went by and the patches not only persisted, but they also got bigger. The red dots became wide plaques, scaled and dry, which cracked the surface: a collection of deserts all over my skin, with no oasis to refresh. And I became a zombie, tired all day long, not wanting to see anyone because I feared their reaction. I stayed in bed, looking at the ceiling, reading, watching a movie, crying, sleeping.
The second doctor I visited gave me the first correct diagnosis: Guttate psoriasis. Either way, he erred in something, because he underestimated it; he said that, after a fortnight, every last patch would be gone, with the help of the sun, a lot, in excess.
They took months to go away.
That consultation was a point of no return, not just for me, but also for those around me. My family stood by me every step of the way: through every medical consultation (endless consultations), the line at the pharmacy, and the phototherapy waiting room. They invested all that time in me, and I’d love to be able to give it back to them in some way.
After knowing the name of my affliction, I started investigating it. The photos on Google shocked me, all those bodies were full of scaly patches. I read that people with psoriasis have a 58% chance of having a cardiac episode, 46% of developing diabetes type 2, and 43% of suffering a stroke. On the other hand, there’s a 30% chance of it leading to psoriatic arthritis, where inflammation is experienced in the joints, leading to difficulty in moving and, in some cases, a possible deformation. To a lesser extent, 10% end up with depression.
The numbers scared me. They were crude and abrupt. I also looked up statistics in Argentina, I wanted to see how many people like me there were. Here, it is not as widespread, so most people don’t know it exists. According to studies, many people have not yet been diagnosed with the disease, although it affects 1.19% of the Argentine population. In adults, the prevalence is 1.71% and in children, it reaches 0.12%. Considerable numbers and yet ambiguity abounds when diagnosing.
Phototherapy
One of the methods I used to treat psoriasis was phototherapy. You have to step inside a kind of sunbed — vertical, not harmful — that uses Ultraviolet light B to penetrate the skin and slow down the growth of the affected skin cells.
The day I had my first session, I got to the office where I was to be treated, signed off some papers, and sat in the waiting room. When they called me, I walked inside a little room with the UVB unit next to me, there was hardly any space separating me from it. I took my clothes off, left them on a chair, and knocked on the door to let them know I was ready.
I stepped inside the sunbed and closed the door. Light panels surrounded me. The space inside was so tiny that I couldn’t stretch my arms because they bumped into the cold metal.
The only time I touched the light panels was that day.
A woman came into the room and asked me to close my eyes. She turned on the machine, which started making an ear-piercing noise, deafening. I waited. She told me not to worry, that it would be quick. I was naked and with my hair tied because I wanted the heat and rays to reach all my skin.
All my skin had to be exposed.
I had made up my mind to burn every last dot.
The heat that phototherapy rays give off barely warms the skin. That first time, I was inside for only thirty seconds, but they felt like ages. I was straining myself to keep my eyes closed because I was scared of opening them by accident and burning my retina. I also tried to keep my legs and arms away from each other so the rays would impact every part of my body from the same angle and they wouldn’t leave any marks or scars on me. I didn’t want to be any more spotted than I already was.
When I finished, a thought emerged: what if it doesn’t work?
Chills ran down my spine.
As you get more sessions, time and the intensity of the rays increase because the skin gets used to the treatment and puts shields up to defend itself. The body always looks for ways of preserving itself. The maximum time I was inside was only a few minutes, maybe three, in the course of many months.
A loud screech from the machine told me the session was over. I stepped outside and looked at myself, I wanted to see how the patches were gone already. It was a naïve thing to do: the shift on the plaques were like brush strokes, almost invisible, imperceptible to the eye.
Psoriasis was only starting to scatter all over my body, reaffirming its place, and it proved reticent to treatment, whether it was body creams, phototherapy, or sunbathing.
Control zone
The following months were a constant up and down, both in my disease’s progression and my mental state. At times, patches seemed to go away and I got excited; then a few days passed and they reappeared with a brighter color, so I felt disillusioned again. My anxiety was exacerbated, at its peak: migraines, suffocation, difficulty to breath, panic attacks, and pain in different parts of my body. Vertigo and fear were all I felt, the possibility of going through a new outbreak scared me. I distrusted doctors and anyone who tried to give me an answer.
I looked at my skin obsessively, to see if even the tiniest mark that I found wasn’t another patch, waiting to grow.
My immune system was malfunctioning.
My brain scared me, I kept thinking about the disease all the time and worried that if I didn’t stop, that would cause more stress and, consequently, another outbreak.
I wanted to leave my body and my head.
Now and then I still experience outbreaks from time to time. A lonely dot appears for no apparent reason, and these negative thoughts come back: I see plaques where there are none, I worry, I think about getting treatment again. But after a while, I notice what I’m doing and relax, pushing all that amorphous mass of discomfort to the side. I let my patches rest too.
Sometimes it’s harder than others, but I do it.
I help myself, my body, and my mind.
A slow process
I was slowly getting better but a ghost still haunted me: the lack of a specific cure. This was a daily reminder that maybe the improvement I was going through was only temporary. So my parents took me to another medical consultation, where I was told that it was time to start an intravenous medication. Once a month, I’d have to stick in my leg a syringe the size of a remote control.
Apart from that, all I had left to do was accept psoriasis and, maybe, start therapy.
When I stepped outside the doctor’s office, I felt different than how I started, my mind was finally relaxed: I had a concrete answer, and it would all be over soon. I walked down Callao in silence, the noise from the cars didn’t even bother me. It was a warm autumn day, with a slight breeze. My body felt lighter. But then, after some minutes, my parents told me that they thought that kind of medication was unnecessary, given the improvement my rashes were showing already. It was transgressing my body again: the intravenous injection was an intruder in my inner system.
At first, I was angry and complained, I wanted to get rid of the problem as soon as possible, but I couldn’t change their minds.
Even though I understood what they were getting at, I still felt frustrated: after six months of coexisting with my patches, I would have to go on doing so for an indefinite amount of time.
A few days went by until we found a doctor specialized in psoriasis. She did a complete assessment of my situation, starting at my first outbreak. After performing a series of studies and analyzing them, she decided that I should start with a medication called ‘Artrait’, which was methotrexate. I would take it on Tuesdays, along with a folic acid pill on Thursdays to protect my stomach. In addition, I would have to do blood tests every fifteen days, to monitor my condition.
We bought the medication and I read the leaflet:
“In psoriasis, the rate of production of epithelial cells in the skin is generally increased compared to normal skin. This difference in proliferation rates is the basis for the use of methotrexate to control psoriatic processes. (…) It is indicated for the symptomatic control of disabling, severe, and recalcitrant psoriasis that does not respond adequately to other therapies, but only when the diagnosis has been established by biopsies and/or after a dermatological consultation.” — TRB Pharma: https://trbpharma.com/_site/product/artrait-comprimidos/?attachment_id=899&download_file=hi2i2i62j58m2
It seemed like a cure had finally arrived, in the form of a 10mg pill.
It didn’t take too long for me to start feeling calmer. Psoriasis hadn’t left, but by taking medication a weight had been lifted from my shoulders, or at least I felt it that way. It was only a matter of time before it was completely gone.
One way or another, I started saying goodbye to my dots.
With my therapist, I also worked on accepting my body, just the way it is. Why had I wanted to change it so badly? Why did I want to take something from it, even if it were scales? The patches were becoming white, so I looked like a Dalmatian, but it didn’t bother me as much as before. Perhaps it was time to trust my body.
Astronomy
In October of that same year, someone offered to display my art pieces at an arts center.
There were only four days left until the exhibit.
I never drawn or painted faces or people, and for some reason, I never wanted to, since my childhood. That’s why the exhibition’s topic took me out of my comfort zone and even placed me in a paradoxical position too.
It was about bodies. Just as I had spent months trying to accept my own.
I had been painting galaxies on circular canvases for some time, so what I did was link space to the human body, which is like a universe, with its constellations, planets, and specific functioning. Then it occurred to me to expose my own body too. By that time, the spots were already white, and I called them stars, so I collected photos of them and put them together with the rest of the material I had, including a text I wrote about my experience.
I arrived at the arts center and organized my stuff on the wall. I did so in a way that it would all be organized within its chaos. I liked how it turned out. The exhibition was full and its atmosphere was chill, with music playing in the background and other artists’ exhibits too.
I talked with my friends and meanwhile, I looked at how people approached my exhibit and read my text, took pictures of the whole thing. It felt weird, and it gave me goosebumps. Suddenly, a girl asked me if I had done the galaxies. I answered yes, and she said, look, I have psoriasis too. And then she showed me her patches, so different and so similar to mine at the same time. It was another collection of deserts that lived and breathed like the person carrying them. She told me that my text moved her and helped her see that she wasn’t alone. We talked for a while and then parted ways. I never saw her again.
In the beginning, I didn’t want to do the exhibit. I was afraid of being exposed, of people seeing my thoughts and emotions in such a translucent way, without anything covering them.
I also exposed my psoriasis that day.
Only later did I realize how I did it: I didn’t present them as an anomaly that burst into my body, but rather as an essential part of it, that accompanies it and gives it strength and a sense of identity, protects it too.
My red and scaly shield showed up to teach me how to take better care of myself. Whether it’s from what orbits around me, or what’s inside my head.
A white constellation of dots that breathe and inhabit my body with me.
