Although 20% of humans will have at least one episode of urticaria
at some point in their lives, for the overwhelming majority of them it will be a short-term condition. Isolated encounters with acute
urticaria are almost common, and for most people the cause can be readily identified. A small segment of the population, however, may develop a chronic
form of the disease
; for many of those the root cause can be identified. For a few, though, it will remain a mystery. These individuals are said to have chronic idiopathic urticaria
, and I am one of them.
Other nodes and websites can tell you about chronic urticaria and its many varieties, causes, triggers, and treatments. You can find pictures of urticaria (and its sister demon, angioedema) around the web. Rather than telling you these things again, I will share with you what CU feels like, and what it does to the lives of its victims. My symptoms are common for individuals with this condition, though not everyone will have had these exact experiences, and everyone has a different response to their situation.
Have you ever had an itch on your right thigh, down toward the knee and sort of on the inside? You probably have, but you don't remember it - you scratched your leg, the itch went away, and life went on. With CU, no matter how much I scratch, the itch doesn't go away. Most of the time it even gets worse, spreading up to my hip, across my belly, along the other leg, up my stomach...you get the idea. Giving in to the desperate urge to scratch one spot means that within a minute or two I will be scratching all over. And the itch won't go away - countless times I have broken through the skin, only realizing I was bleeding when my fingers came away wet. The itching goes on for so long that my fingers become aching and cramped from staying bent to scratch so long.
Chronic urticaria forces you to drastically change your lifestyle. While attempting to determine the culprit, I have changed my laundry detergent (doctors recommend Ivory Snow or All Free), my soap (Cetaphil is popular, as it was formulated for use in neonatal ICUs), and my shampoo (Johnson's Baby is best). Making random guesses at foods made grocery shopping take three times as long because I had to read all the labels, and each trip to the store ended up being depressing when I discovered something else I couldn't eat. Because CU makes your skin terribly sensitive, there is suddenly a great list of forbidden products. Air fresheners, Febreeze, and most cosmetics are irritants, and shaving cream would be forbidden if I dared drag a razor over such inflamed skin. For many CU patients, especially those with delayed pressure urticaria, even clothing is a nightmare. Non-binding garments are best, of course, and I have heard of snipping the elastic on pants, wearing underwear inside out to reduce seam chafing, and going without a bra.
I often experience sleepless nights as a result of the CU. Sometimes, I just can't take a break from scratching long enough to get to sleep. More often, though, tiny bits of dust in the bed keep me awake. This is not just princess and the pea syndrome - every tiny grain of dirt feels huge when you've got CU. And forget about eating in bed, you'll be cleaning those crumbs out for hours...it's just not worth it.
People stare at you when you have chronic urticaria, and they stare at you more when you're suffering from angioedema. Most people have no idea what those red blotches are on my skin, especially on my face. Having a lip or eye swollen to twice normal size can cause even friends to wonder about the possibility of domestic violence. I am fortunate to have very long hair, and while I pull it into a ponytail for work I will often take it down for the commute home, just to have some camouflage from everyone around me. I have met other CU sufferers with short hair who are genuinely envious of this ability to hide.
And then there's the fear. Many CU patients carry an Epi-Pen in case of emergency. Although anaphylactic shock is not too common, it is a distinct possibility. My most terrifying moment with CU - after the initial diagnosis was achieved - was the day my tongue itched. Let me tell you, that is a unique experience. Your tongue has almost certainly never itched before, because believe me, you'd know if it had. I was absolutely petrified. Other fears arise when I go for a day or so without hives...because I know they're coming back.
All this lasts a long time, too. More than 50% of people with chronic urticaria have it for more than a year, and up to 20% have it at least twenty years. Of course, nobody wants to suffer like this for a year. It's not going to clear up on its own, and doctors can provide medication to ease the symptoms. But I have seen laments on discussion groups from people who don't have access to good doctors, who can't figure out what medication will help, or who can't afford the medication they need. Because CU isn't widely known or understood, most people suffer in silence. No talk show host has ever done a show about CU, although Jane Pauley has made passing references to her experience with it.
Chronic urticaria is tough, and it is real. Chronic urticaria changes your life for the worse. It consumes you every waking moment. All we can do is try to teach others, so they'll know.
This essay was originally written a couple of years ago, but I never got around to posting it. Fortunately, I can now count myself among the lucky ones. I still have CU, but a cause has been identified: I am allergic to the immunoglobulin E
component of my blood. This literally means that I am allergic to myself, and I have no hope of escaping the CU by avoiding a particular thing. I am lucky to have my symptoms almost fully controlled through an intensive cocktail of anti-allergy medications, and occasionally I take steroid
s if the CU seems like it wants to flare. I'm still sick, but my symptoms are under control, and I have my life back.