Lost in Limbo

I’ve been having these weird and (to me) disfiguring rashes that started off on my left cheek. That was mid May. Initially I thought they were just zits gone wrong. But the rash got worse. It was itchy as hell!
So I went to a Dermatologist in the hospital I work in (one of the perks of working at a Specialist Hospital). After lots of questioning, she came to a conclusion that it was mostly taenia faciei, which means face fungus in plain English. I was like "WTF?! - don’t tell me it’s from Keeno for sleeping on my bed for so long…"
I was prescribed anti-fungal cream, and when I informed my Head of Department, she went "How is it possible? You’re a young man, not immunocompromised." And i went "I dunno…"

For three weeks I applied the cream, almost religiously. We’re talking about my face here, dammit. But nothing happened. And much to my relief, the scraping she took came back as negative. I was fungus-free! But my dermatologist was puzzled. The diagnosis now changed to contact dermatitis; ie I was allergic to something. She had to ask me "Sorry to ask you this, but do you wear makeup?" for which I answered plainly and simply "I don’t even use talc." So maybe the OT mask was the culprit. But I’ve been using the same standard-issue brand for years. Hmm…so the anti-fungal cream was out and in came the steroid cream. Which, for some reason, made it worse. The itchiness was barely tolerable, I kept waking up every two, three hours finding out I was scratching my cheeks, my chin, my ears. I felt like a flea-infested dog.
I went back to my dermatologist after a week. I had stopped applying the cream after a few days, and medicated myself with antihistamines, which made me drowsy almost all the time. Drat. She consulted a senior Dermatologist: it was time for a biopsy to be taken. And since I’m working in Plastic Surgical Department, she suggested that they take my biopsy, since the surgeons achieve a more cosmetically pleasing result. Fair enough. I went straight to Hasnul, my senior registrar. We arranged for a date for biopsy.
And OH MY GOD! I’ve always operated on patients, telling them the local anesthesia injection would hurt, but I had no idea how much. And now I can relate with my patients. Damn that hurt! But I’d rather bite my tongue off than scream like a girl (to hell with being politically correct!). And the scar is barely visible. I’m happy with it.
However, I am not happy with the biopsy report. I can still remember the day I got the result.
It was August the 5th, and I had taken leave cos my face was just plain itchy. My phone rang at about 8:30am, and a lady pathologist informed me that my report was ready. So I asked her: "So what do I have?" Her reply was: "Confirmed. DLE."
Discoid Lupus Erythematosus. The one diagnosis I really dreaded. So I called Farrah-Hani, my registrar and good friend (sorta like a big sister to me), and informed her I was going to take the rest of the week off. She kindly told me to rest and she would sort out the 2 calls I would not be doing. And a few minutes later my Head of Department called me and gave her condolences, and told me to rest and sort this whole thing out.

Before I go further, let me give a bit of light on this DLE thing that has set me off course. Discoid lupus is a form of an auto-immune disease, where my immune system attacks my skin. It is the mildest manifestation of lupus, and only 5-10% of patients would develop Systemic Lupus Erythematosus, SLE, which is a full-blown autoimmune disease that attacks the whole body from the inside. It usually manifests on the face, being the most sun-exposed area. Something about UV light altering the skin’s DNA so that the immune system attacks the skin. It presents as itchy rashes, and if it occurs on a hair-growing patch, that area becomes bald. Meaning, if it occurs on my scalp, I will have bald patches. And this disease recurs and relapses. It may take months to years for an active attack. When the lesions heal, it is by hyperpigmentation or by scarring. The bald patches usually remain bald.

And let me describe a bit about myself. My vanity borders narcissism. I am not good looking, but I would - by reflex - check my own reflection on any surface that gives off a reflection. Those who know me know that I love dressing up. Not using dresses, but smart-casual wear, or sometimes the grunge look, depending on my mood. And I don’t dress up to impress people, but to make me feel good about myself. I am of average height, slightly thin, with no distinguishing features. It is my sister who looks good on all the photographs, and who is popular everywhere she goes. It is my brother who has the height and build, and looks good in anything he wears, even when the clothes are mine. I would always be behind the lens, simply because I don’t look good on camera. Hell, I don’t think I look good, period. But I love the way I carry myself. That, and how under-aged I look. And I would freak out if i even have small zits, much less the major zit breakout when I was sitting for my final exam.

So you can just imagine what my reaction was when I got the diagnosis. This is a lifelong disease, which can only be controlled and not cured. And the lesions may just get worse every time my DLE recurs. My world came crashing down. And I kept on scratching to relieve the itchiness.

My dermatologist asked me: "Are you depressed?" And one of my closest friends, Zay, who suggested that I came to Dermatology in the first place, told me that DLE is almost nothing to worry about. It’s not a systemic disease.

And these are my thoughts, that I’ve been keeping to myself, and cannot bear to tell my mom:

To me I will be disfigured for life, no matter if people say otherwise. I used to check myself in the mirror to make sure my tie was straight, or my hair was in the right place and spikiness, or to adjust my shirt. Now I look in the mirror to check if the lesions are spreading (which they are), or to apply the steroid cream or sunblock. I avoid looking at mirrors whenever I could. When I try new clothes and almost ending up buying them, I inadvertently look at myself, and think "Why bother? I still look bad." And I’m dreading any itchiness on my scalp. I really do not want to get bald. And now I get people’s attention, but for the wrong reason. How would you feel if people give you a funny look and ask you whether your illness is infectious? I wake up lethargic cos I can’t sleep for more than 3 hours without waking up all itchy. And I have to avoid the sun. Me, who love being under the sun, the clear sky, and the beauty of the land with the display of light and shadows! Photography is one of the only things I really have passion for, goddamit!

So do I fell depressed? I sure am on a straight road towards it. I don’t go ranting about "WHY ME?! THIS IS NOT FAIR!" I have lupus, so I have lupus. No use blaming anyone. But I do keep on asking, of all the places, why my face? The lesions are going to get worse with time, and I am positive the full depth of it will finally hit me when i find a bald spot somewhere. Touch wood.
To everyone else, it’s a mild disease; nothing much to worry about. To me, it’s life altering. If there is a reason for my getting it, I may or may not find out. But the full depth of what’s going on in my head, it will break my mom’s heart if she ever finds out.

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