A year ago, I was 38 and healthy and had just taken a leap in a whole new direction in life, leaving a safe job in admin to pursue a career in corporate communications. Everything was going great until I woke up one early-winter morning to find patches of itchy, painful hives on my left elbow, right knee, left eye and right ankle.
That was just the beginning: Over the next few days, the hives continued to spread, and soon they covered 75 percent of my body. For five months, they were everywhere: my face, my palms, the soles of my feet and even deep inside my ears.
The sensation was unlike anything I had ever experienced. As the hives emerged, the area around each one felt hot, both to the touch and under the skin. And they hurt like a bruise, but with an itch so deep and so intense it didn’t matter how hard I rubbed them — relief lasted only 30 seconds.
It felt like I spent every waking minute scratching them, and I had no idea how to explain them to concerned colleagues. Finally, after several days, unable to concentrate on anything else, I made an appointment with my doctor. I haven’t been back to work since.
My official diagnosis is chronic idiopathic urticaria (CIU). Translation: I am suffering from chronic hives. Doctors tell me the hives are autoimmune in nature — a response to my body attacking itself — and that they could persist for a few months, or a few years.
One percent of the population suffers from CIU. Of that, I’m one of the 50 percent who get accompanying angioedema (swelling) of the hands, feet, lips and eye orbits. And one of the 40 percent who experience delayed pressure urticaria, which means if I wear fitted jeans or socks with snug elastics, I get painful hive formations around my waist and ankles the next day.
The medical specialists I saw told me—a bit too casually — that CIU is generally viewed as nothing more than a nuisance, and I just need to grin and bear it. Early on, I was waiting to see an allergist and overheard him say to his student: “Up next is a case of chronic idiopathic urticaria — good luck with that one.”
My diagnosis didn’t bring relief; I was angry. CIU changed my entire life practically overnight. It took away my health, my job, my ability to exercise, the clothes I could wear, my social life and my faith in making plans for the future.
People everywhere — cashiers at the grocery store, nurses at the hospital — would ask if I was contagious before touching me. While this made me feel alienated, deep down, I didn’t blame them. Thankfully, my family and friends were relentless in their love and support. They knew my hives weren’t contagious. My mom and my little nieces were often the ones who applied cooling lotions and balms to my body.
As with many autoimmune conditions, there is no cure, only medications to ease the symptoms. I was initially prescribed two types of prescription-grade antihistamines for the hives and an antidepressant to help combat the emotional toll. The antihistamines left me in a constant haze of sedation. Naps morphed into three-hour sleep sessions, and then I’d feel guilty about how little I’d accomplished that day.
To distract myself, I tried writing, making jewellery, listening to music and sifting through my Instagram feed, swooning at photos of the American desert, a place I hope to drive through one day. Other times, I would just sit and zone out, or cry.
One night, a few weeks after the hives started, they got really bad. I was completely covered from the shoulders up, with swelling in my lips and cheeks and around both eyes, but because I had been told time and time again that this was my new reality, I didn’t go to the hospital until the morning. It turns out I was experiencing anaphylaxis from the CIU. The doctors told me I was lucky my throat hadn’t closed up.
When I got to the hospital, I was given a high dose of corticosteroids, which gave me mood swings and heart palpitations. It took five weeks to slowly taper off them; their effect, combined with the sedation of the antihistamines, made me feel drowsy but pumped at the same time. It was an unnatural sensation I wouldn’t wish on my worst enemy.
CIU hasn’t been extensively researched, so very little is known about it. On the advice of my allergist and immunologist, and desperate for anything that might help, I tried a diet that eliminated all foods that provoke a histamine response in the body, such as tomatoes, alcohol, pickled foods and smoked meat. After three months without improvement, I sought out a functional medicine expert who suggested I eliminate gluten, dairy, alcohol and sugar from my diet.
This wasn’t easy for me to process, mentally; it was hard to fathom undergoing another major change. But tests had revealed some significant food sensitivities and deficiencies, and while there was no guarantee the dietary changes would help, I had to give it a shot. I had to have hope. Hope is everything. “Day by day” became my mantra.
After a few weeks, I started to see small improvements. I started to wake up to slightly fewer eruptions. At first, I thought it was too good to be true and I must be imagining it, but as the weeks went by, the hives kept decreasing, and I am now back to being basically hive-free.
It’s unclear exactly why they retreated, and I know they could return at any time, but I’ve learned to truly appreciate living in this moment. My energy level has improved and I feel ready to return to work. Through this process, I learned that I’m more resilient than I thought I was, and as a result I fear very little in life anymore.
I choose to believe that CIU happened to me for a reason. The large, heart-shaped hive that appeared on my thigh one day reminds me that I have the opportunity to come out of this an even stronger, more empathetic person than the pre-CIU me.