Each of us knows what it means to live with chronic hives in addition to hearing the comments, sometimes vain, that are made about the condition:
You’re under too much stress, you need to rest and you’ll be fine.
You have allergies, be careful what you eat and, believe me, it’ll be over.
Drink less coffee, since caffeine promotes the appearance of hives.
Beware of tomatoes, for they are acidic.
And… there are many more!
Chronic urticaria is like the water drop torture; we know that we will have plaques, angioedema regardless of our actions; but we do not know when the crisis will occur exactly. It’s like a pressure cooker, which means that, at some point, it releases some of its pressure, and not always at the best of times.
How many times have we committed to going to a show or to lunch at the restaurant - activities we had to give up at the last minute due to a hive attack? Our condition becomes a source of disappointment for our parents, our friends, our boss, our colleagues, etc. Little by little, we modulate - in spite of ourselves - our ways of acting according to the disease. It’s the one thing that’s taking control of our life choices.
I’ve changed employment and gave up promotions so I did not have to give presentations or conferences. I chose to reserve surprises for my loved ones by inviting them at the last minute. I hide, I hide my plaques under long sleeves and I have pairs of shoes in double (one corresponding to my size and the other of a larger size for days when my feet are swollen). I try to reduce as much as possible the risk of disappointment for my loved ones, because the disease does not only affect me. Chronic hives are taking more and more control of my life.
Over time, my entourage seems a little jaded by my condition. It seems that they no longer want to take it into account or hear about it. I feel more and more isolated with the disease when no one understands me. The reaction is human, but difficult for me to accept, who would need to talk to people with the same disease. However, everyone is in his or her own corner and is trying to survive his or her impacts alone.
The Urticaire Chronique association aim to bring together all the stakeholders who help us regain control of our lives; to encourage meetings and exchanges between us in order to break the isolation. Membership is an important first step. After all, each of us can support our fellow human beings in order to better live the impacts of illness on our lives.