The Secret Underworld of Chronic Urticaria

Less than one percent of the population is burdened with this condition. Labeled “idiopathic” because the cause is unknown, Chronic Idiopathic Urticaria (also known as chronic spontaneous urticaria) is much more than a skin condition.

Many with Chronic Urticaria (hives) also have an accompanying autoimmune disease and it is thought to have an autoimmune component in many cases. My immunologist theorized that my case is autoimmune and told me that it is often labeled as “idiopathic” because root cause is unknown and treatment is the same regardless the cause.

In the end, it doesn’t matter what triggered the disease, we are all suffering very similar symptoms. Some of the symptoms that can accompany CIU are brain fog, fatigue, joint pain, low blood pressure, racing heart, anxiety, shortness of breath, insomnia, angioedema (swelling), flushing, gastrointestinal disturbances and headache to name a few.

People with chronic hives must take medication and avoid environmental triggers to prevent these life-altering symptoms. Keep in mind that you cannot see many of the correlating symptoms of CIU. The sufferer may not seem fully present in their interactions with you. They may be suffering from severe brain fog. Maybe they aren’t keeping up with housework or you feel they could be more active. Remember that severe fatigue is often experienced by those with this condition.

You can’t see the joint pain, the exhaustion, the nausea, or the emotional turmoil that is often experienced with CIU. Please take the time to do some research and learn about this disease so that you can better understand. In my own life I have been called a hypochondriac, told that it is all in my head or that I am making it up all together. Stress is often associated with hives and some people tell me “just stop stressing out so much” as if it were that simple. Although stress can cause symptoms to flare there are many other contributing factors. Doctors always brushed me off when I listed off my many symptoms. They failed to put the pieces of the puzzle together and viewed my symptoms as separate from one another or labeled it as psychiatric and I was prescribed antidepressants when I didn’t feel depressed. Finally, after years of suffering, I found a doctor who took me seriously and referred me to an immunologist where I finally received a diagnosis.

A diagnosis like this should be overwhelming but after years of feeling like nobody believed me, my diagnosis was a relief. I finally had proof that I wasn’t crazy, it wasn’t all in my head and these are very real things I had been experiencing. I found support in online forums and learned that many who have this diagnosis share the same symptoms that I was told were in my head.

I still find that the people in my life cannot understand what I am going through. I follow a special diet to control my symptoms and mitigate further damage to my body. This is often met with eye rolls or comments indicating that it’s not that serious. The truth is that people are just unaware. Unless you know someone personally who has this condition chances are that you have never heard of it. It can feel very isolating.

Please read this post about what NOT to say to someone with Chronic Urticaria.

If you know someone who has this disease, please do your best to understand that it is much much more than just hives.

Please feel free to share this blog post to raise awareness.

If you are a woman who suffers from this disease you can find support, health tips, challenges, and recipes in my Facebook group just for women with Chronic Urticaria.

To your wellness,