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.

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.

My husband and I had been trying to conceive for about two months, wanting to get pregnant before my 35th birthday in October. I still remember the way his face looked when I showed him the positive test. It was an unadulterated kind of joy.

My 35th came and went, and for the first time in my life, I was truly sorry that I was able to drink. Prednisone and the other drugs I was taking weren't exactly compatible with conception, and we were forced to stop trying as soon as I was diagnosed.

In my weakest moments, I wondered if the only thing worse than being incessantly asked when you’re going to have kids is when people finally stop asking.

Hey, I told my husband. Instead of creating life, look what we got instead! Let’s call her Angie. Neither of us really laughed at that.

When I asked my doctors whether my miscarriage could be responsible for the angioedema and hives, (or my cats, or gluten, or a recent trip abroad) I got the same answer from all of them: It's a waste of time trying to figure it out. A needle in a haystack.

Their plan was not to heal my body through the determination and eradication of the root cause, but to suppress the symptoms using medications, indefinitely. Of course, this is nothing new. It is the way that Western allopathic medicine has, for years, dealt with rare or difficult-to-diagnose disease.

To be fair, no two people who have idiopathic angioedema will react to medications the same way, so it is a very difficult disease to treat. It is an entirely personalized experience, and because of that, doctors are forced to rely on a one-size-fits-all-until-it-doesn't protocol for treating the symptoms. Antihistamines, H1/H2 blockers, leukotriene modifiers, and if those don't work, immunosuppressants and other hard-core drugs. For the patient, it is a constant cost-benefit analysis. Some of the meds can cause severe liver or kidney problems, and one even carries a black box warning of possible anaphylaxis upon injection.

For four months, I was on a moderate dose of the steroid prednisone along with a slew of other drugs. Don’t get me wrong—sometimes these medications are necessary. When my lips, tongue, and throat were swelling, they were most definitely life-saving. And certainly for other conditions, they are an absolute must. But how much is too much? And in my case, since the symptoms came on so suddenly, wasn't there some value in searching for the root cause?

The drugs have also had unforgiving side effects—hair loss, depression, foggy thinking, weight gain, dizziness, and sudden drops in blood pressure that have caused me to faint more than once. Still, I'll admit that I'll take those over the throat swelling any day.

Despite my doctors' best intentions, I'd realized they had little time or interest in digressing from the drug-heavy treatment plans they were trained to provide. I could feel some of their suppressed eye-rolls when I asked about natural remedies. "I don't listen to anything that isn't backed by double-blind studies and scientific data," was a sentiment I heard more than once.

A fair statement, yes, and I’ll be among the first to champion science over practically anything. Just because something is natural doesn't mean that it is good for you. But, if the best that the latest medical thinking can offer me is a temporary reprieve from pain but possible long-term consequences that are just as bad, if not worse, than the original issue, is that really the best treatment plan?

I don't blame the doctors. I am so grateful for even getting a diagnosis so quickly. And I am unbelievably lucky to have good health insurance—or health insurance at all, for that matter. Even with it, I have spent a couple thousand dollars on care for this condition.

The fact is, like many others, I had lost touch with my own body. Or maybe I was never in touch in the first place.

Until now, I'd completely relied on doctors to tell me how all the different systems of my body work together, even the basics that I should know myself. Did you know that bad dental habits can lead to heart disease? Or that you're taller in the morning than you are in the evening? Yeah, there's the danger of over-Googling. But technology has given us an advantage when it comes to owning our health. On top of countless social media groups, there are over 40,000 health-related mobile apps, with chronic disease management apps like Crohn’s Diary, Glucose Buddy, and Cancer.net allowing patients to take the reins when it comes to how they deal with their own disease, a Brookings Institution report recently found. Tools like these and others can function as great support resources.

When I came to grips with the idea that the short term relief I was getting from the medications might cause long-term damage, especially to my liver, I became desperate to get off of them. I'd tried in the past, but each time I dropped the dosage on my medications, my symptoms would worsen.

By learning from the mistakes of other angioedema sufferers online and understanding how prednisone affects the adrenal glands, I was able to wean myself off of the steroid completely. Prednisone takes the place of cortisol, a naturally occurring hormone in the adrenal glands. When a person uses this type of steroid, the adrenal glands create less of their own, and so the body eventually requires the steroid to continue working, which is why reducing dosage, even incrementally, can have side effects. I'd read that others were able to wean by dropping the dosage by 1 milligram each week, and that they'd increased the amount of other meds, like Doxepin, to help them. With the agreement of my doctor, this is what I did.

I also tried "oil pulling", an Ayurvedic cleansing ritual, received weekly acupuncture treatments to help with my anxiety attacks, and took probiotics daily. I'm not sure if it was the alternative treatments, the medication, or a combination—or if the condition simply eased up on its own—but after ten weeks, I was able to get off the Prednisone. A few weeks later, I weaned myself off of Doxepin too. I'm not cured, but I'm better. Now I only take steroids in emergencies, on top of one daily Allegra and one Zantac—yes, Zantac. Who knew that there were histamine receptors in your stomach, too?

I hadn't realized how intricate our bodies are until the angioedema. The reason my eyes become bloodshot right before I have a facial swell: tiny blood vessels in my eyes were swelling as an immune response. Amazing, how it all works.

I hate the cold, detached analogy that the body is a machine. Our bodies are simply what they are: they are us.

Now, I have enough confidence to be my own healthcare advocate and weigh my options before immediately taking a drug that a doctor prescribes. I can talk knowledgeably about different drugs, ask my doctor questions, and incorporate non-Western modalities where appropriate.

I'm not by any means advocating that people forsake their doctors in favor of Google. But today's technology offers people with rare diseases the ability to take ownership over their health and to seek support rather than dwell in sickness alone. Ownership, in my case, meant a combination of guidance from my doctors and the knowledge I'd gained from people, websites, and online forums.

In an ideal world, there'd always be a George Clooney nearby, reassuring us of our inner strength during rough times. There'd be doctors who could always eradicate the root cause while treating the symptoms. There'd be friends around whom you wouldn't mind burdening with how scared you are and how weak and pathetic you feel. But, as Kurtis Blow once famously said, these are the breaks.

For now, I'm perfectly content LOL-ing with my fellow swellies online about our "Botox lips without the Botox price" or hitting up a relevant thread on a chronic disease forum. Or, on the days when it's too intolerable, taking a few extra pills if I have to and crying into my husband’s shoulder.

Five months ago, when I was a month into the disease, I wouldn't have said what I can confidently say now: I am completely optimistic that even if there isn't a cure for angioedema in my lifetime, I will be just fine getting through it.