Living with Uncertainty

Uncertainty is a part of every stage of chronic hives (chronic urticaria). These feelings develop when you cannot find an accurate diagnosis or a cause for your symptoms. To make things worse, the symptoms and severity of chronic hives tend to be unpredictable. Trying to find the right treatments can be a emotional roller coaster, not to mention expensive.

This reality makes it hard to make plans and go about your normal life. It may also create enormous stress and interfere with relationships. Unfortunately, these uncertainties increase your risk of stress, anxiety, and depression.

All this is why managing uncertainty in healthy ways is an important part of coping with chronic hives.

Coping with diagnosis delays

Finding an accurate diagnosis is a common source of anxiety for people with chronic hives. Diagnosis can take weeks or months due to many factors, such as:1

  • Lack of awareness about chronic hives among doctors
  • Difficulty identifying a cause
  • Symptoms that come and go
  • Time spent ruling out other conditions

During this process, you may not know what your symptoms mean or what is causing them. The time spent visiting different doctors and specialists can be exhausting. Many people feel frustrated that some doctors are not familiar with chronic hives. In response, those with chronic hives often do their own research in the search for answers.2,3

Dealing with unpredictable symptoms

Chronic urticaria is often unpredictable. Hives and itchiness can get worse without any obvious causes or triggers. You may feel like your health is out of your control.4,5

Hives and swelling can randomly interrupt your daily life. In turn, it can be hard to make plans when you are worried about symptoms cropping up unexpectedly.2

All this can impact your quality of life and lead to isolation, anxiety, and depression. Some ways that may help reduce the impact of unpredictable symptoms include:2,6

  • Wake up early to plan your day based on how you feel in the moment
  • Maintain a routine to take as much control of your daily life as possible
  • Eat healthy and exercise regularly to fuel your body
  • Practice stress-reducing activities, such as yoga and meditation
  • Keep a symptom diary with photos of hives to identify triggers and show doctors
  • Learn as much as possible about your symptoms
  • Talk to a therapist about accepting and handling uncertainty
  • Talk often with your doctor
  • Join a support group

Handling doctor’s visits and treatment changes

Antihistamines control symptoms for many people with chronic hives. But when symptoms are not controlled by antihistamines, the benefits of other treatments can be uncertain. Even when symptoms are controlled, you may worry that your medicines will stop working.2,7

Because chronic hives is a rare condition, doctors may or may not know much about which treatments work best to treat chronic hives. That is why people often must try many different drugs and home remedies before finding the right combination. Plus, up to half of those with chronic hives never find out what is triggering the condition.8

You may need to visit doctors often and see a variety of specialists. This process can be exhausting, time-consuming, and expensive.1

It can be frustrating to see doctors who are not familiar with treatments for chronic hives. Complicated or missing information about treatment adds to feelings of uncertainty.1,3

Communication is key to dealing with doctors and treatment changes. Be sure to:2,6

  • Learn as much as you can about chronic hives so you are well-prepared to make treatment decisions
  • Bring someone with you to doctor’s appointments
  • Communicate often with your doctor and ask plenty of questions
  • Share problems of daily living with your doctor so they understand the full impact of your situation
  • Be an active member of your care team

Day-to-day life with a rare disorder often feels isolating and frustrating. You can better manage and overcome life’s obstacles when you have the support you need. Surrounding yourself with good advocates and supplying yourself with knowledge can help you live a fulfilling life.

By providing your email address, you are agreeing to our privacy policy.

Written by Matt Zajac │ Last reviewed: April 2022