My Urticaria from Hell

You’re on vacation and ready to take on the world of warmth before returning to reality and getting smacked in the face with a bunch of responsibilities. You’re basking in the sunlight as the cool breeze runs through your hair and bam – your eyes are itchy, insanely watery, you’re sneezing, and blowing your nose every few seconds. Seasonal allergies are sure enough to grant you the gift of congestion and are nothing more than a nuisance when trying to carry on with your day to day life. These were the only allergies I ever knew besides food related allergies, and as much of a pain in the neck that they are, I would love to be able to say that’s my only physical health downfall. Unfortunately, it’s been five agonizing years since I was diagnosed with a skin disorder that, given my luck, is incurable, but fortunately treatable. Anyone who suffers from any sort of allergy knows how annoying it is to have to live life walking on eggshells, avoiding whatever it is you’re allergic to, and constantly have your life at stake due to one wrong move. To have to scrape your skin until it peels, to feel your breathing turn into wheezing, and the fear of trampling into anaphylaxis is a nightmare from hell. Given my circumstance, I am fortunate enough and grateful to have this allergy under control and no longer have it be a threat to my life on a day to day basis. It’s hard enough to not be comfortable in your own skin, but what do you do when your skin’s not comfortable with you? Dematographic urticaria has been a frustrating mystery that I’m still trying to solve.

tumblr_inline_nhktx1JJXY1qzqdemI was sixteen years old when I visited my older brother in Japan. He had moved out there for three years to teach English to elementary students and I couldn’t have been more thrilled about immersing myself in a brand new culture for the next three weeks. Although I’ve done my fair share of traveling, I was particularly nervous about navigating through Japan as it was only my mom and I when my brother had to work. We didn’t know much of the language and although we had become accustomed to the small town my brother lived in, we had to venture out to the larger cities to make the most of our vacation. The most incredible part of the entire trip was that all of the friends my brother had made, whether it be through the school he worked for or people of the community, were so hospitable and generous to my mom and me. Not that it wasn’t expected, but it’s amazing to see the lengths others and yourself will go to, despite a language barrier, to ensure you’re accommodated and comfortable, whether it be the patience to interpret each others gestures, or observing simple acts of kindness.

Aside from the brutally hot weather that I wasn’t very keen on adapting to, it was an incredible experience. I was meeting some of the kindest and warmest people I have ever met in my life, and was blessed with unforgottable memories that I still crave to relive one more time. I fell in love with cities, people, lifestyles, and just a whole new culture to what I had ever known. Japan was easily one of the cleanest streets I have ever encountered in my travels. If you saw an empty bag of junk-food floating around outside, you’d assume someone dropped it before you’d think it was litter. The bus and train rides are never anything less than quiet and peaceful, and the food was to die for. Admittedly, having an allergy to shellfish and seafood tends to bring down a vacation to Japan, yet I was still able to go through a process of trial and error to discover my likes and dislikes of a variety of foods as anyone else would. However, that was my only restriction. That is, until a few weeks passed.

162675_10150355201420164_4149629_nNow, I didn’t go to sleep in Paris and wake up in Tokyo (for all my Lupe fans, you’re welcome) but I did wake up in Tokyo to a bunch of red bumps on my legs. It more looked as if someone attacked and scraped me than it did hives. We realized our hotel room had been infested with bed bugs and I was instructed how to treat it, which should have been the end of the story. However, once back in the town my brother lived in, my mom’s bites faded and healed, while mine not only didn’t disappear, but instead worsened. I dismissed the constant need to scratch for the last few days I was there, as it wasn’t unbearable or too uncomfortable–until I was back in my own bed. It was nothing but a nuisance during the day, but a nightmare by 12 am when I was clawing at my sensitive skin just for a simple good night’s sleep. I Google searched my one and only symptom which was burning, hot, itchy, raised and inflamed skin. By the time a month rolled around, and I received results from dermatologists, it was clear I had a skin disorder seen in 4-5% of the world’s population, and one of the most common types of urticaria – Dermatographic urticaria. More popularly known as “skin writing” disorder, it occurs when the act of being touched, whether it be lightly or a stroke/slap causes hives to instantly appear. It can be as simple as someone holding my hand, to even wearing a pair of socks. I remember taking off my socks one night to find it’s patterns etched into my ankles.
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Looks pretty neat, eh? I won’t act like I wasn’t initially fascinated to draw designs on myself and flaunt it. But the burning, and the aching is not worth the little amusement. Not to mention, being sixteen and socially awkward in high school, having welts all over my body took a toll on my self-esteem. I see many people on Tumblr who post theirs and make some wicked designs, and I’m not only impressed that they are able to successfully draw without hurting themselves, but I admire their strength to embrace something so openly that I was once so ashamed and embarrassed of. Imagining myself swirling designs on my skin makes me cringe as mine is so excruciating that beginning to stroke my skin is equivalent to feeling fire. If I were to float in the air for the rest of my life, I would be perfectly fine as I would not have to touch a thing. Furthermore, the first outbreak of urticaria can also lead to other parts of my body, even if it is not directly stimulated or scraped, and will last hours, even days. If this wasn’t irritating enough, I learned there was no cure and I was just stuck with this for as long as it takes me to outgrow the disorder. The theory that my loved ones have is that since my 4″10 self doesn’t seem to be doing anymore growing, I likely won’t outgrow it. Hardy hardy har.

Like anyone suffering from something excruciating, you start to research and piece together all the information you can to learn how to treat, if not cure, your discomfort. I was tossed around from specialist to specialist just to hear the same thing: “There really is no cure. It could be stress. It could be cold water. It could be heat. It could be the laundry detergent you use. It could be tight or abrasive clothing. It could be this, it could be that.” Okay, it could be. But what is it? No answers. Every time I mentioned either the climate change of Japan to Canada or the foods I had eaten, they would tell me it probably wasn’t that and that I would outgrow it. I brought up the incident with the bed bugs and when I was checked for any sort of bug virus, I was clean of it. I’ve read forums that state that sometimes these bugs are microscopic it’s difficult to detect them and they are in fact the cause of some urticarias. It would make sense given that I had bed bugs, and next thing I know, my life changes with a skin disorder. Hearing uncertain answers and that it would eventually go away isn’t enough when you’re relying on a tablet to live comfortably without scratching your skin off. And what made it worse was that two years down the line, I began wheezing when I couldn’t take my medication on time. So now I rely off a tablet to breathe properly. Isn’t that lovely?

I’d like to tell you that I have been able to figure out what has hives protruding through my skin, but like most skin conditions, it’s one of those things that you just treat and pray you outgrow. I am extremely grateful that anti-histamines allow me to live a normal life, but the thought of not having access to that medication one day scares me half to death. Some people have it worse and I’ll always value the control I have over it, but sometimes just knowing you have it is not enough control. Despite the circumstances, here are the two most important things I learned these past five years:

1) I have never appreciated the little things as much as I did when my urticaria worsened. To know there was a point where I wasn’t scraping against my skin every day and not having to take a tablet feels like the best days of my life, even though it seems like something insignificant. I was really frustrated at one point and threw a lot of “Why me?” tantrums on several occasions. So now, every easy breath of air for me is a blessing and I long for the day when I can wake up and not have to rely on pills to live comfortably.

2) It’s not that bad. It’s bad, it’s pretty damn bad, and I will never undermine the way it makes me and other people feel to have something so frustrating. However, at the same time, so many people in the world wish to have my bad days. So while scratching my skin and wheezing isn’t a pleasant and sometimes scary way to live, it’s not all the time. As of recently, it’s rarely ever the time as my anti-histamines have proven to be wonderful daily saviours. I’ve allowed something that has controlled my life and consume my self-esteem to instead show me that it can always be worse. I’m not fighting for my life every day trying to battle something uncontrollable. Although I may struggle to breathe if I do not take my medication, I know to take it and it works; case closed.

Allergies in every way, shape, and form are a pain. Excruciating or not, it’s hard to adjust to swallowing tablets, avoiding certain foods and temperatures and hiding out during your favourite seasons. Sometimes you just can’t escape your skin, or the puffy eyes, or the runny nose. What my allergies allowed me to see was the blessing in the small things I used to have without allergies, and more importantly, what I know I still have regardless of what I may endure.

– Jasmine Shaffeeullah

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