Chronic urticaria arrives suddenly into someone's life. You find yourself covered in itchy wheals and often you don't know why. When you search the internet you find too much information. You leave your computer more worried than reassured. Your loved ones each have their own opinions. You are having an allergic reaction, you are too stressed, you must be coming down with some infection, are you anxious, are you drinking too much coffee, have you eaten strawberries or tomatoes, or something too spicy? Have you changed soap, fabric softener? Etc. In short, they don't know any better than you.
After a day or two, you decide to ask your pharmacist for advice. In Canada, a pharmacist is currently the most easily accessible healthcare professional. In an ideal world, he checks with you that it is not a reaction to the drugs you are taking, an insect bite, a known allergy. He'll probably end up directing you to the antihistamines section, and tell you to avoid your triggers.
You work from home for a day or two taking your over-the-counter medication. Your condition improves after a week, you no longer have hives and you stop the antihistamine. Two or three days later, your hives return without precise reasons. You take medication again and the cycle begins again. You decide to seek a consultation from a family doctor. You're lucky. You get an appointment in three weeks.
About 2 months after your first attack of hives, you meet the family doctor and he tells you that you have the right treatment. Take antihistamines and avoid your triggers. Problem is, you often don't know what those are (if there are any), and some are just plain unavoidable - your hives get worse when you're anxious, but try explaining that to your two-year-old and your boss. You start avoiding those triggers you know and can avoid, you stay home to avoid having to explain for the nth time that your face is swollen because of your condition and not because someone has hit you, and your world becomes increasingly smaller and more isolated. Also, the antihistamines, at the dose you are taking them, are making you sleepy, constantly hungry and forgetful.
Now you have a first decision to take. You go back home like this or you insist. The right choice is to not give up, but it's not easy. You are already physically and mentally weakened after two months of struggling with hives. If you let go, you will have to come back another time for the same problem and you will be even more vulnerable.
Everyone has their story. Document yours with photos to make your point better understood. Here is an example of quality of life impact : "Yes, antihistamines are well and good, but the hives stay there. I've been itching for over two months doctor. Now, despite the medication, the hives remain there, they decrease for a little while, but they come back. In addition, I can't sleep well at night, I'm tired and sleepy during daytime and have a hard time concentrating at work. I've lost patience with my children. Also, I can no longer mow my lawn. I have swollen hands. I play golf and my feet swell so bad they don't fit in my shoes anymore. My social life is non-existent. I can't go on like this."
If you are lucky, you will have an immunology or dermatology consultation. Now you have a second decision to take. Keep taking an ineffective treatment with annoying side-effects and endure for a year or two, doing less and less in your life as you avoid triggers. Or request follow-up and treatment optimization while waiting. If you let go, ask yourself what physical and mental state you will be in when you have your appointment with the specialist.
Prepare your discussion. Explain how you feel with hives. Talk about your work, your social life, your appearance, your fatigue. Express your concern about going home with medication that doesn't work and causes debilitating side effects. The delay in seeing a specialist doctor stresses you out. You have nothing to lose. Unlike the majority of patients referred in immunology and dermatology, you are in pain. Health professionals don't always understand the very real impact your condition has on your life. You have to explain it and advocate for yourself.
Finally, the day of your consultation with the specialist will arrive. Continue to document your symptoms to facilitate diagnosis.
If you found this article, remember that a patient association like Chronic Urticaria can help you find quality information. We can also offer you our support services. The patient journey to obtain a diagnosis is long and difficult. You're not alone.
Your physical and mental state will be put to the test. Self-care and sharing with others with hives can help. Several support groups exist on Facebook, ours is called Urticariens | Facebook.