I Was Born With Chronic Hives and I've Learned How to Live With Them
Last updated: September 2023
My chronic hives story started the day I was born, or maybe even before that. All I know is I came into this world screaming in pain and bright red. The lower half of my body quickly became covered in a painful, bright red rash. The doctor was never 100 percent certain what caused the hives, but thought my skin could be reacting to my urine.
Chronic hives from birth
My mother loves to tell the story of the first month of my life and the fresh hell it was for her. We all direct the film of our lives. In my mother's film, I was the villain, and she was the victim of my chronic hives. After all, she is the one who had to clean up after me, as a diaper-less baby, and listen to me scream for a month! Of course, in my own story, I was the victim of my own body and its bizarre reactions to the world around it.
Struggling with feeling in control
To this day, I never feel fully in control of my body or its overreactions to everyday items. But I do not face this struggle alone. I am eternally grateful for the constant support of the one living being who makes me feel seen, heard, and unconditionally loved: my Medical Alert Service Dog, Dr. Smallz.
No matter what kind of reaction my body is having, flaring up over a simple food, scent, or touch, he greets me excitedly, happy to see me from the minute I wake up. Even when I arise mid-flare up because histamine levels are highest throughout the night, he encourages me to get going and lifts my mood with his sheer enthusiasm for life.
My hives are related to my stressors
My most recent hives flare-ups seem to correlate to new, additional stressors in my life, including augmentin antibiotics for infections in my fragile body; the passing of my father, the human who loved me unconditionally; the 10th anniversary of the Boston Marathon bombing, which I was lucky to survive.
Despite my additional challenges, I struggle to say no to people who ask me for help. As a volunteer, patient advocate, ambassador, public speaker, health writer, and admin for a support group, I feel obligated to support my community. We are all a work in progress, and I am learning to set boundaries so that I may continue to help others.
Inspired by the community to share my story
In 2022, I was inspired by the Chronic-Hives.com community to finally "come out" about my struggle with them. Before becoming a writer, I felt too embarrassed to complain about something healthy people saw as a minor nuisance.
From feeling dismissed to feeling seen
I always felt invalidated and dismissed when I tried to express the pain and frustration my chronic hives caused. When my hives resurfaced, red, weeping, painful sores on my face, friends found this shocking. Yet, my hives still seemed inconsequential to them when I tried to express how they made me feel. However, the Chronic-Hives.com community continuously validates my anxiety about this medical condition, making me feel seen and heard.
Ways I've coped with chronic hives
Finding a good immunologist has helped me feel more in control of my chronic hives flare-ups. I've learned a lot of coping skills, substituted many products, and listened to the advice of my fellow patients.
Some of the changes that I've made in my daily life to manage my conditions and hives include the following:
- Eating more organic foods and less gluten, dairy, and sugar
- Switching beauty products to be free of dyes, chemicals and allergens
- Daily detoxing with supplements, tea, and nasal rinses
- Weekly Epsom salt baths
- Infrared saunas
- Vagus nerve stimulation
- Ultrasound and red light therapy
- Stress management (setting boundaries and meditating).
Chronic hives have so many causes that pinpointing all your triggers is almost impossible. For these reasons, I attribute getting my hives under control to dietary and lifestyle changes.
Find your chronic hives silver lining
Every dark cloud has a silver lining, as the saying goes. If we apply that to our bodies, we can find something positive in our chronic conditions, even chronic hives. If it were not for my multitude of chronic diseases, I might never have become so resilient.
It is because I survived my struggles that I am now an award-winning, featured speaker. Living with chronic conditions like hives has helped me develop greater patience with my body, better communication skills with doctors, and more confidence when meeting senators as a patient advocate.
I would not go so far as to say I am grateful for my disabling medical conditions. But I am thankful for the inner strength I developed because of them!
How well do you feel you manage your chronic hives?