Eczema: I'm More Than My Skin
At almost 30 years old, I’ve never known life without eczema. This chronic skin disease has been a huge part of my story since I can remember, with some periods worse than others. Although I’m managing my disease well now, it has been a difficult journey to get where I am today.
As a child, I remember having really severe eczema. I was always making excuses about why my legs were scratched and bleeding, saying I had allergic reactions or that my puppy had scratched me.
Since childhood, learning to cope with the symptoms of severe eczema has been a never-ending process. My flare ups involve extreme itchiness and red sores that affect my whole body. When you have such a difficult, chronic disease, you'll try anything to get it under control. I’ve tried everything from light therapy to acupuncture, from topical steroids to non-steroidal topical treatments. For a long time, I felt trapped in a vicious cycle of trying out the next new treatment option—over and over again.
During flare ups, rashes and dryness cover almost my entire body. Before my disease escalated, I knew that my triggers, or external irritants causing symptoms to worsen, included stress, certain detergents, hot showers, and water. But when I turned 26, my eczema became so consistently severe that I could no longer distinguish any particular causes for these flare ups.
As far as I can tell, there was no rhyme or reason to why my eczema was so debilitating during that period of time. Some days I was bedridden because I was in so much pain. Anxious and itchy, I had open sores that bled. But the worst part was the lack of sleep. At night, I was so itchy that the only way I could give myself a few hours of relief was to wrap my whole body in ice packs to numb my skin.
The emotional toll was just as difficult to navigate as the physical. Managing a job, a relationship, and trying to take care of this sickness on so little sleep was overwhelming. Feeling isolated and exhausted, I became depressed and started seeing a therapist and psychiatrist in addition to the dermatologist treating me for eczema.
Because my eczema covered every part of my body except my face, I was able to hide the visible effects from most people. Feeling so horrible and at the same time looking fine to everyone around me was a battle in and of itself. I couldn't explain what was wrong to others because it just didn’t make sense. I remember a woman at the grocery store saw my hands and arms and asked if I had poison ivy. The difference between a chronic illness and a poison ivy rash was so vast I didn’t know how to respond.
After about a year of living this way, I joined a clinical trial for a biological drug that has recently hit the market. For the trial, every day I had to rate how bad my symptoms were on a scale of 1 to 10, with 10 being the worst. For the first few months, I was recording 10 every night. But as the trial progressed, I began hitting lower and lower numbers. After about four months of taking the medication, I began to see a huge improvement in my health.
Since starting the trial and continuing with the medication, my life has completely changed. My flare ups are very rare and much less severe. But in addition to finally finding a treatment that works, I realized the value of community when living with a chronic illness like eczema.
For a long time, I didn't know anyone else with eczema. There is a lot of shame associated with chronic illnesses, especially with skin diseases like eczema, and sharing details about something that feels so intimate is really hard. But after I got involved with the National Eczema Association, I connected with people with stories like mine. Participating in awareness events and talking with people about treatment methods that have worked for them helped me move past the feelings of embarrassment and isolation that have plagued me throughout my life.
The disease is really unique in severity and symptoms from person to person, and that is part of why it can be so difficult to manage and talk about. But I’m hopeful that the medication I’m using will continue to allow me to live fully and healthily, and I’m hopeful that recent advances in the treatment of eczema will help other people, too.
Ashley Blua, 29, works in corporate communications and lives in Hermosa Beach, CA.