Chronic hives have a large impact on your physical and mental health. The unknown nature of chronic hives can cause frustration and fear. Random episodes of itchy or painful skin can lead to poor sleep, social stigma, and anxiety.
People living with chronic hives go through 4 stages after symptoms first begin. Each stage has common experiences, emotions, and medical issues. The length of time in each stage varies for each person. After symptoms begin, it can take weeks to years to get a proper diagnosis. Symptoms usually last 2 to 5 years.1
Stage 1: Crisis
The first stage is when symptoms appear on different parts of the body. Hives and swelling interrupt life and cause people to wonder what is happening. People may be worried about having chronic conditions such as allergies, lupus, or cancer.2,3
It is common to try to self-medicate with antihistamines or a steroid like prednisone. People may also try to identify triggers by removing certain foods or products.2
Common emotions during this time include:2
- Distress
- Disorientation
- Shock
- Fear
- Confusion
Stage 2: Searching for answers
The next phase involves searching for answers, which commonly includes repeated and frequent doctor office visits. Many people often seek answers from the internet as they try to understand the cause of their symptoms.2,3
During this time, people get no official diagnosis and few answers from doctors. They may see different specialists, such as allergists and dermatologists. Doctors may suggest different treatments to see what works, even before an official diagnosis.2
Common emotions during this time include:2
- Frustration
- Anxiety
- Uneasiness
- Confusion
Stage 3: Diagnosis
During this stage, people finally receive a diagnosis of chronic hives. The time from when symptoms first began to diagnosis often varies from several weeks to several years. Lack of awareness about chronic hives and unpredictable symptoms cause these diagnosis delays.2,3
Even after diagnosis, uncertainty and unpredictability still cause anxiety. There is also very little information online about chronic hives. This makes it hard to self-educate about the condition. Plus, doctors sometimes do not explain medical terms in ways that are easy to understand.2
Common emotions during this time include:2
- Relief and hope
- Isolation
- Confusion
- Satisfaction
- Fear of the future
Stage 4: Disease management
During this stage, people with chronic hives learn to live and cope with the disease. There is a mix of negative and positive experiences during this time. Effective treatments bring a sense of relief and hope. But feelings of anxiety and helplessness still remain.2,3
Social stigma is a common theme of this stage. People often report that others look at them like they are diseased or contagious. This can lead to hesitation to go out in public or actively engage in their personal and professional lives. People also often try to hide symptoms with makeup, long hair, or clothing. Explaining the condition to others can be painful and tiresome.2
When treatments do not control symptoms, people must try different medicines and see different specialists. This leads to a repetitive and tiring cycle of trying to relieve symptoms.2
Some other common experiences during this stage include:2
- Searching for the right doctors
- Learning how to reduce triggers
- Learning how to cope
- Seeking normalcy
- Weighing risks in everyday life
- Trying different medicines and treatment combinations
- Routine doctor’s appointments
Common negative and positive emotions during this time include:2
- Anxiety and depression
- Healthcare fatigue
- Frustration with doctors
- Relief from symptoms
- Excitement and hope
- Fear about treatments no longer working
Long-term progression of chronic hives
Chronic hives are not life-threatening and usually do not last for more than a few years. The average duration of chronic hives is 2 to 5 years. One study showed that chronic hives lasts for more than 5 years in only 14 percent of cases.1
Longer duration of symptoms is linked to more severe disease and the presence of other conditions. Long-term chronic hives has not yet been well studied.1