How the Internet Helped Me Cope With My Rare Disease

I have a condition that causes profound, random swelling and hives. The thing that’s helped me most so far is the amazing communities I've found online.
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Tomás Fano/flickr

I've never been one to crave optimism. I didn't immerse myself in the triumph-over-adversity messaging of the Chicken Soup for the Soul series as an adolescent, nor do I typically share affirmations or cat video pick-me-ups on social media. I'm more inclined to the analytic wisdom of bell hooks, George Orwell, or James Baldwin than to the spiritual aphorisms of the Dalai Lama or Deepak Chopra. Whether I saw the glass as half empty or half full never much mattered to me: the glass has what it has.

So when I was diagnosed with a fairly difficult-to-treat disease called idiopathic angioedema and chronic urticaria (a fancy way of saying we don’t know why you swell and hey, enjoy the 24/7 hives) six months ago, I wasn't quite sure how to cope. My body is essentially in a constant state of allergy and releases large amounts of histamine into the bloodstream, causing painful tissue swelling and itchy, tortuous hives.

Angioedema quickly dominated every aspect of my life, until I couldn't talk or think about much else. I needed help. Positive thinking was a great start, but alone, it was no match for the symptoms of this somewhat rare disease.

As it turned out, optimism for me came entirely in the form of something doctors would prefer you avoid when it comes to disease: the Internet.  

***

I first experienced the symptoms of this frustrating condition shortly before graduating from my master's program. I awoke one morning with a thick, swollen tongue, half-shut eyes, and red welts the size of half-dollars across my body. Throughout that day, my feet went through progressively increasing stages of knotting and burning, as if I had sewn golf balls underneath my skin. By the time I finally made it to an urgent care that same afternoon, I was covered in hives and couldn't walk. 

Over the course of the next few months, I saw nearly ten doctors and at one time was taking about 20 pills a day, including nutritional supplements to mitigate the damage that the medications were doing to my liver and kidneys. I still have days when walking is painful or I can't type because my fingers are too inflamed. Twice, I've had to remove my wedding ring using butter because my fingers had swollen and begun to turn blue overnight.

But the worst part of idiopathic angioedema, by far, is the throat and tongue swelling.

If you've seen the recent Alfonso Cuarón movie Gravity, you'll know something about what it feels like. In the movie, Sandra Bullock plays a medical engineer venturing into space for the first time to repair the Hubble space telescope. At the film's outset, she and her colleague, played by George Clooney, both become dislodged from their tethers and tumble into space. It's excruciating yet awesome to watch. The slow, almost lugubrious gait of the astronauts, the quiet, accumulating horror of depleting oxygen reserves, the intangible backdrop of space—it's the perfect storm for the type of sci-fi thriller I usually love to watch.

Unfortunately, it's also exactly what throat swelling from angioedema feels like—quiet, unstoppable, and downright scary, like drowning without being anywhere near water. Whether it was sympathy pains or coincidence, while Bullock gasped for breath, I too found my throat constricting. Just to get through the movie, I had to pop a few steroid pills and wait for the swelling to subside, keeping one hand on my EpiPen for reassurance.

The threat of anaphylaxis has been the hardest part of it all. It can happen slowly or suddenly, whether I'm watching a movie or on a road trip, surrounded by miles of brown nothingness. It's a frightening pressure unlike anything I've ever experienced—if my trachea were a keyboard, this would be a fortississimo.

Every morning there are new hives, different things swollen. Perpetually tumescent, I've become a living blow-up doll. There has also been so much wasted time, where short drives have taken hours because I'd think I was asphyxiating, or when my computer has sat untouched for days. I once spent an afternoon taking small sips of water to make sure I could still swallow during one of my episodes, refilling the glass and drinking until it was time for my next dose of steroids. It was only when the sun set that I realized three hours had passed.

Essentially, the most basic proposition I had with nature—breathing—became a tenuous one. This is life now.

In the beginning, there were more days than I'd like to admit where I wanted to give up. Occasionally, I wanted to let the undulating panic and anxiety that are the new mainstays of my life take me the way a creeping, foamy shore would a sandcastle.

***

I never thought I would join a Facebook or Yahoo group for a health condition, but it makes sense. According to a Pew Internet study performed in 2013, 72 percent of Americans looked online for health information within that year, and 35 percent used the Internet to diagnose their own or someone else’s condition.

And let’s face it: Nobody wants to hear about how sick you are. I am so thankful for friends and family who have called to check on me or offer a drive to the doctor when my husband couldn't. But ultimately, it's a real downer for the healthy to be reminded of their mortality, to feel helpless when a loved one is in pain. And people are, well, just busy. It was mostly for these reasons that I initially looked online for ways to get through this disease.

It’s this small group of people online, hailing from right here in Los Angeles to as far as England, South Africa, Nigeria, and beyond, who've been able to help me cope with the anvils that angioedema throws at you. People I’ll likely never meet.

Besides support, I've gained valuable treatment insights from them, too. The nature of this condition—that it’s idiopathic—means that doctors really don’t know how to treat it or what causes it.

But my fellow sufferers have taught me that I do have some control over this. I learned about natural remedies like nettle tea and quercetin, a bioflavonoid derived from fruits. I learned about foods that were high in histamine and salicylates and read the latest peer-reviewed articles about angioedema they shared. I learned about how simply hydrating could lessen the swelling and hives. How Reiki and acupuncture could help with the panic attacks that were now accompanying my bouts of throat swelling. How it was possible to manage this disease on antihistamines alone, as opposed to the heavy steroids I was taking.

But most of all, despite how little anyone knows about this disease and how seemingly rare it is—only about 1 in 1,000 have it—I learned that I am not alone.

***

It was also to these complete strangers that I confessed I had had a miscarriage only a month before I was diagnosed, and complete strangers who assured me that they had successful pregnancies despite the condition.

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Simona Supekar is a writer and an English instructor at Pasadena City College in Los Angeles.

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