On disfigurement

(Note: this is one of my rare super-personal posts that some may find icky and TMI. I think it’s important to write about here. Consider this your warning. Cut for the squeamish.)

There are probably a few people here who I haven’t seen in a month or two who I might be seeing at upcoming events like the September Blogger Meetup, Mobile Camp Vancouver 2 (tomorrow!), Launch Party 5, BarCamp Vancouver, and others. I realized upon reflecting yesterday that those people who haven’t seen me might be in for a bit of a shock when they do.

The above picture from Photobooth doesn’t show it very well, but the shadow of my neck is actually a very deep red rash. The bumpy texture on my eyes isn’t all camera noise – they are actually flushed red beneath the skin and scaly. Not apparent in the picture is how flaky my ears or the back of my neck are. My non-expert opinion is that the somewhat-in-control eczema I’ve had with me for a very long time has now bloomed into something vaguely psoriasis-like. I also experienced a random episode of the hives, and seeing as it did not seem to be triggered by my typical triggers, I am stumped as to the cause. (More on that later.)

It’s been a bit jarring, to return to what I consider a state of visible physical disfigurement. I grew up with it wearing a brace for scoliosis from the ages of 7 to 12. That never affected my face though, which is the part that is new for me. But it did, and it has, given me terms of reference from which I can consider the state of being ill.

The thing I find absolutely wonderful is that for the three weeks I’ve been like this, I’ve had approximately zero people mention it in a way that made me feel uncomfortable – even people who I had never met. I have not felt that people have avoided talking to me because of it, even in a situation with high potential for social awkwardness like the CUTA Youth Summit (where over 80 of us did not know each other then quickly glommed into groups and cliques over the course of a weekend). Oh, the difference 20 or so years of maturity will make. I’m sure for some people it has made a difference, made me unapproachable or less interesting. But perhaps I’ve been interesting enough in conversation to win that person over when they eventually overhear what I’m passionate about. I’m glad I have this, instead of reverting to being a shirking violet like I did from years 7 to 16.

Some of my friends have been very candid and forthright about their struggles with their health online, showing incredible strength and grace, and have inspired me to write about my situation right now.

One thing I do have to say about other people’s concern: many people are very graciously and generously concerned for my health and want me to seek treatment for this. The problem is that I already have, back when the problem wasn’t this bad, and after weighing the information carefully I’m pretty close to convinced that those treatments (corticosteroids, tetracycline antibiotics) are in fact making the problem worse, in combination with some factors of the environments I find myself in (moldy, dusty, other allergen-filled). So I’m pursuing an alternative method of treatment, one that will likely take anywhere from 3 to 6 months to see effect, as well as making several changes in my life. I’m also hoping to find new ways to deal with the stress that is really the root of this problem.

I’m ready for it, personally. The quick fixes have not worked for 10 years, I’m ready to try something for the longer haul that might yield other benefits elsewhere. But until then, I will need to gauge in conversation and daily life whether people are having problems looking me in the eye or holding my gaze when I speak to them.

So. My point in saying this here?

This exists, so don’t be surprised. I’m OK. If you must, please draw attention to it in an appropriately calm and sensitive fashion. It’s not as bad as it looks – at least probably not when you see me.