I've been suffering from a condition called Chronic Idiopathic Urticaria (CIU) for 15 years and I've always found something was missing: peer support. While the disease is quite rare, it does not mean support shouldn't exist for these rare people.
CIU causes swelling, pain, and itchy hives for no apparent reason. The symptoms of the disease are almost impossible to prevent as the reaction is not caused by an allergen; it is a chronic autoimmune disease. For a lot of CIU patients, "the end" of symptoms is not in near sight, making support vital.
Support is imperative in all stages of life, especially throughout childhood, a critical stage of development. As someone who had CIU in this critical stage, I should have had peer support. I should have been given the resources to connect to other patients.
As a group, CIU patients experience a lot of the same things: judgement, embarrassment, anxiety, depression and loss of relationships, which impact the quality of daily life. CIU patients are almost always uncomfortable and peer support provides a "no judgement zone." A doctor can be amazing in many ways, including treatment, but unless they have the condition, most of the time, they don't understand the full extent of emotional damage caused by CIU. Doctors must realize that we must treat the body and the mind.
I plan to create a patient forum in Atlantic Canada next spring, so that patients who are suffering from CIU can meet others and not feel so isolated by their condition. Those who aren't comfortable meeting others in-person should also have resources through technology, and for that reason I have a Facebook Group for those also living with CIU in Atlantic Canada where patients can share experiences, treatments or how they are feeling.
Ending the Stigma
Public awareness campaigns are essential to building awareness for CIU. With other, more common, chronic conditions there is more understanding. My theory is that by educating Canadians about CIU, it will produce more understanding and less judgement for those suffering.
There is an incredible campaign that has just been launched called "Sketch an Itch." Sketch an Itch allows patients to submit their story to be either posted or sketched by a talented artist. When I am broken out in hives all over my body and have really bad angioedema, people see the image of someone who is dirty, contagious and lazy. They don't understand that we as CIU patients didn't choose this - it is out of our control. As patients, what we must remember is this is just an image of us - this doesn't mean it is who we are.
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