Chronic spontaneous urticaria (CSU) is like your least favorite aunt. They show up unannounced and overstay their welcome.
These red, itchy welts have no obvious cause and last 6 weeks or longer. And the effects of the persistent itching caused by CSU go far beyond just skin. Living with CSU can impact your mental health, as well as your work and personal life.
Symptoms of chronic spontaneous urticaria
The CSU is not predictable. Unlike hives, which occur when you’ve been exposed to something you’re sensitive or allergic to, CSU hives come and go seemingly at random. And they can stay for a long time. This means you may have a “good” week with few or no hives and plan to go out. Suddenly beehives appear and make you feel sick. Or they could come out right before a big presentation at work or a highly anticipated (and needed) vacation. This unpredictability can leave you feeling uncertain about planning and frustrated when you have to cancel it. It can also affect your relationships if those around you don’t understand how hard it can be to have these hives over and over again.
Here are four ways living with CSU can impact your life.
Increased anxiety and depression
Researchers have found that people with CSU are more likely to suffer from anxiety and depression – up to six times more likely – than people without the condition. If left untreated, depression can lead to physical problems such as heart disease and stroke. Both anxiety and depression can also affect your ability to seek medical care, comply with treatment plans, go to work or school, and care for yourself and your family.
A form of talk therapy, cognitive behavioral therapy (CBT), is helpful for many people with anxiety and depression. The goal of this type of therapy is to find coping strategies and help you deal with your thoughts and feelings. Talk to your doctor about getting help if you have anxiety or depression. There are also groups that can offer support, such as WeCU and the Allergy & Asthma Network.
sleep deprivation
We know that our sleep can suffer when we are in pain, but many people don’t realize how disruptive itching can be and therefore may not understand how tired or exhausted you are. More than half of CSU patients cannot sleep properly. This, in turn, can worsen depression and anxiety, as well as other mental health problems. Lack of sleep can also increase the risk of accidents, injuries and long-term health problems such as heart disease and some cancers.
If CSU is affecting your sleep, it is important to talk to your doctor about it. If you are taking second-generation antihistamines that do not cause drowsiness, your doctor may suggest taking another antihistamine that does cause drowsiness in the evening. There may also be other medications that can help.
Working on mind-body and relaxation approaches could be helpful. There are many self-help options to help people sleep, but working with a therapist might be the best place to start, especially a therapist who works with people suffering from CSU or similar health issues.
Reduced enjoyment of social and professional life
There are several reasons why CSU could have a strong impact on your social life, work or education.
Adults with CSU miss more work than people with other allergic diseases and do not perform as well at work. According to one study, people with mild CSU lost about 12% of their work productivity, and those with severe CSU lost as much as 44%. The same thing happens with children with CSU. They do worse in school than their classmates who don’t suffer from these long-term hives.
Daily tasks and intimacy can also be affected. It is not uncommon for some people with CSU to have difficulty keeping up with personal hygiene, family life, and household management. Sexual activities and intimate relationships can also become difficult. Maintaining a relationship can be challenging when you are insecure about how your skin looks, you are constantly itchy, tired, and your mental health is compromised.
Hobbies and just having fun are usually a good way to relax and recharge. But if you live at CSU, they may be the last thing on your mind.
It can be difficult to find clothes that feel comfortable. Tight clothing rubs against the skin, and some garments are made from irritating fabrics such as wool or have textures or seams that may feel uncomfortable against the skin. If you follow a certain style, it can be disappointing if you have to choose loose-fitting clothes in different fabrics that don’t match what you want to wear. If you have to wear a uniform to work or school, this can also be an even bigger problem and you may need to ask for adjustments in terms of style or fabric.
Increased risk of infection
Although not common, if you scratch your hives so hard that the skin breaks, it can cause an infection that can become serious if left untreated. If you break your skin, be sure to clean the area, apply antibiotic ointment, and cover the broken skin to protect it. Contact your doctor if you experience redness or swelling, or if you see discharge or pus from the area.
Taking over the leadership of the CSU
CSU is more than “just beehives”. It has a significant impact on your life. Discuss your condition with your HCP to ensure you find the right medication to control your hives, and seek support from those around you and groups and communities who understand CSU can help you live a fulfilling life with this chronic condition.
This educational resource was created with support from Regeneron and Sanofi.
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