We all know what hives are, don't we? Raised, itchy patches that can drive allergic people completely bonkers. Most of the time, hives are caused by an allergic reaction. And when that happens, antihistamines reduce the swelling, and the hives disappear within a fairly short amount of time. Some people, however, live their lives with what's known as Chronic Idiopathic Urticaria. Urticaria is the proper name for hives. CIU means the hives are long lasting (chronic), and have no known cause (idiopathic).
Although this is not an allergic condition, it's often mistaken for one, which is why I wanted to talk about it here.
Photo credit: Sue Hargrave
It isn't just an itch that sufferers of CIU have to experience. It's an itch that makes them want to tear off their skin, a burning pain that won't let up, and swelling that causes more pain. It's huge, unsightly, painful hives, sometimes covering their entire bodies. Triggers can be almost anything: from hot or cold temperatures to pressure to various activities, patients can never predict with consistency when they'll have a painful flare-up. It limits them physically, emotionally, and takes a large mental toll. Worst of all, most people around them don't understand just how awful the disease can be, so CIU patients often suffer alone, ashamed and frustrated.
I interviewed some patients with CIU to get an idea of just how life-altering this disease can be, and I wanted to share their stories here in the hopes of spreading awareness of the seriousness of this condition.
Sue Hargrave is the administrator of Chronic Urticaria Support Group (Private) on Facebook, and I met her in Zurich last spring. She's a wealth of knowledge and experience with regards to CIU, unfortunately because she's been suffering from it for twelve years now. Twelve. Due to daily complications such as severe facial angioedema (swelling), a body completely covered in hives, and painful joints from body swelling, Hargrave had to grudgingly leave behind a 32 year teaching career. Although her friends and family have been incredible support systems, Hargrave spends a lot of time on the Facebook support page, reaching out to others, and sharing her story. She's an incredibly vibrant, warm, wonderful woman, and it's so sad to know her life has been altered so greatly due to CIU. Where she once taught art classes, she now creates art that revolves around the idea of living with this disease. With a solid team of professionals (after being passed from one to another for many years), Hargrave now spends her time educating others about the disease and seeking new information, always, that may lead to some new treatment for her. Her advice to newly diagnosed patients is that there are medications that may help, and they're worth trying (though none have been a cure for her).
Photo credit: Sue Hargrave
People of any age can have CIU, and onset can be sudden - without warning. Many will spend many months, even years trying to identify a culprit, resting finally on a chronic idiopathic urticaria diagnosis only after many long, frustrating, and useless attempts at cleanses, clean eating, minimizing products used, and more.
For Stacey*, a young woman in California, CIU means she can no longer wear high heels or walk long distances. Pressure causes immense swelling which can last for days. This means no fitted clothing, no carrying heavy items (even grocery bags), no nights out with friends. Stacey feels trapped in her own body, unfairly limited as a young person whose life is ahead of her. She can't even wear jeans or enjoy social events without being in pain. For her, the pain is far worse than the aesthetics of the hives, because, she says, "it takes everything not to cry when walking on hive-covered feet, because it feels like walking on hot glass."
Even just making a fist can be torture some days for Stacey.
Bonny*, a student in Oxfordshire, UK had symptoms of CIU starting at age ten. Covered in unexplainable, itchy, painful hives, her school work suffered to the point where she had to drop out. The constant worry about when another flare-up would happen, or how her life may be affected by the disease resulted in anxiety, which further limits Becky's social life. The hives are so swollen and red, and no medications have worked for her. She's exhausted just having to explain to people why she can't do simple things like wash her hands in hot water, or walk up multiple flights of stairs -- all these things exacerbate her already painful condition.
photo credit: patient "Bonny"
Chronic Idiopathic Urticaria has different names across the world but the same symptoms. Often accompanied by angioedema (severe tissue swelling), CIU is often startling to see. Serious swelling of the face (especially eyes and lips) is frightening, and often patients are ashamed of the swelling and rashes. Hands and feet can swell to the point of being unusable, genitals swell, and even tongues and throats swell. Sometimes the swelling in a throat can obstruct breathing and require a trip to the hospital.
Photo credit: Sue Hargrave
One patient told me that in less than one year, she's become a totally different person from who she was before she was suddenly afflicted with CIU. She is shy, nervous, and suffers panic attacks whenever she has to leave the house. Her entire wardrobe has changed to accommodate her needs, and time outside her home is incredibly stressful because any air stimulation can cause a flare-up. She can't just sit and enjoy her kids' sports games -- rain and wind make that virtually impossible. Her moods swing, making her marriage rife with tension, and she had to walk away from a 16-year career.
CIU is a debilitating disease that almost nobody knows about, even doctors.
Stacey says dealing with doctors has been frustrating. "I have had a few doctors just throw medications at me, versus discussing a long-term plan. No one has really cared to get to a root cause." Being passed from a primary caregiver to pharmacists, rheumatologists, allergist and dermatologists is doing nothing to find answers for CIU patients as a general rule. For one Nova Scotia teen, medication does help, but it's incredibly expensive and not covered by her provincial health care coverage, and she has none of her own after having to drop out of university because of CIU.
When I asked patients with CIU what their biggest fears were about the disease, the answers broke my heart:
"Living with this for the rest of my life. That I'll never be "normal" again."
"That I could pass it on to a child."
"That I will never live up to my potential."
I can't imagine living with a chronic condition like this, without relief. I have dermatographia, but for the most part, it is easily covered up, and antihistamines work well to control it. For CIU, medications work for some, but don't seem to be the answer for everyone... mega doses of steroids, anti-inflammatories, beta-blockers and more are taken by patients, yet nothing is consistently helpful, so it's a constant trial-and-error process.
This very personal post about life with CIU is such a heartbreaking read, too. I cannot imagine not being able to cuddle my loved ones, or wear the clothes I want to wear, or do the things I want to do because of something like this.
If you think this is something you're dealing with, I encourage you to speak to your doctor. You can also seek out the support of the wonderful people in this group on Facebook, and find out more about Urticaria Day as well.
*Some names have been changed to maintain patients' privacy.