My last two posts talked about how my tolerance to sunlight varies based on physical and emotional factors. This was intended to be a background that could explain why those unfamiliar with EPP are often filled with skepticism.
It is a very common for patients who have EPP, especially children and teenagers, to be accused of lying, attention-seeking, overreaction, and general hypochondria. I hope my last posts clarified some contributing factors as to why this is so commonly perceived. I personally can understand how someone could distrust complaints of invisible pain which follow ostensibly inconsistent levels of exposure to something normally harmless.
I have a memory of me as a little boy that illustrates this scenario as a whole.
I was a Cub Scout on a Klondike Derby with my fellow Scouts. I was around 9 or 10 years old and had not yet been diagnosed with EPP even though I had been complaining of symptoms as early 5 or 6. I did not understand exactly what happened to me when I went outside in the sun other than that it caused me insufferable pain, usually for days. I did not know how to judge or manage my exposure time, and frankly, as a little boy, I lacked the foresight and self-advocacy to place my fear of future pain over outdoor fun in the present. At that time my exposure limit was greater than it is now. I believe frequent activities like this contributed to my condition worsening as I have aged.
The Klondike Derby is a one- or two-day weekend event held outside during the winter or early spring, when the sun is bright from the snow and muddy ground and unfiltered by the naked branches overhead. Groups of Cub Scouts, known as Packs, from all over a region gather to hike and compete in games of strength, agility, and teamwork: fun and mayhem ensues.
This day was exceptionally sunny and warm. By the afternoon much of the snow had melted into giant pools of reflective, glimmering radiance. I had shed my coat in favor of my short-sleeved Scout shirt. Long before the Derby was over I was nearly delirious from the consuming pain of a full blown EPP attack. I felt like I could barely move, but I knew I had to keep moving or this situation would be made much worse by the ridicule of the other boys; unrestrained by the adult leaders, they had frequently mocked me in similar circumstances, so I tried to hide the pain from them. I remember involuntarily crying secretly, my face raw from the coarseness of my winter gloves as I tried to gently rub away the tears on my face. I did not have sun gear at this point of my life.
One of the adult leaders had recorded much of the Derby and, a month or so later, played clips of the tape for our families at a Pack Meeting. I only remember the end of the tape. The adult leader, of whom I have no recollection other than his voice, brought the camcorder to each of the boys and asked them how they enjoyed the Klondike Derby.
I was one of the last kids he asked. I remember my surprise as I watched from the crowd my face appear on the television set. For some reason, I illogically expected to see some visible feature, other than my expression, that would have given an outward clue of the intense pain I had been in: some sort of swelling or coloring, or perhaps scarring or disfigurement; maybe even a swarm of insects chewing my skin off or a little cartoon character taking a tiny jack-hammer to my face. I don’t know what I expected to see. I did not expect to see nothing other than the unblemished skin of my face.
“Did you enjoy the Klondike Derby?” the leader’s voice asked my recorded self from behind the camcorder.
“I don’t know… it was fun, I guess, but I am in a lot of pain from the sun,” I replied in the most nonchalant way a 9 year old boy can muster under such conditions.
“Right…” the doubt in my leader’s voice was undeniably tangible from my perspective as an observer in the crowd, something that my pain obviously must have distracted me from noticing the first time. “…pain from the sun.”
“Yeah, I’m in a lot of pain,” I responded, again very stoic for a 9 year old.
“Sure you are,” said my leader, his voice patronizing and underlaid with sarcasm. My recorded self just kind of wandered away from the camcorder, oblivious to anything but the pain. I had forgotten the exchange and barely remembered it from my original perspective when I saw it on TV. Most of the boys and even adults in the crowd laughed at that part of the tape.
This was certainly not horrible when compared to other events in my life, but it is significant because it was the very first time I started to grasp why some people chose not to believe me. Up until this point, I had no idea why anyone would doubt me, so I would try to explain and explain, as well as a child could, to no avail. It was not a secret in my Cub Scout Pack, among any of the children and leaders, that I had this unidentified problem with the sun.
The secret was that I was a really tough kid.