4 Mar, 2019

How Eczema stops me from doing the things I love

A 25 year old from Indiana, Rachel shares with us how eczema has affected her everyday life.

Rachel, tell us a bit about yourself

I am a 25 year old female from Indiana. I’ve been a nurse for about 4 years. I spend most of my extra-curricular time playing video games and working out.

What made you want to share your story?

I developed eczema at 12 years old, after a move from Kansas to North Carolina. Not sure if it was hormones, age, stress, or environment that triggered it, but it seemed like a light switch when I developed it. I remember someone at my new school asking why I was red on my neck and I didn’t have an answer. I had an idea of what it was but didn’t know what to tell them. I just said I didn’t know and tried my best to ignore it.

That’s pretty much been my answer for the last 12 years even though I’ve known what it was for most of that time. My skin was red, dry, and very itchy. I could and would scratch till I bled, mostly in the creases of my arms and back of my legs. I especially itched when I was sweating or in contact with allergens such as grass or dander. I was told to take cool showers and use a prescribed topical steroid. I was on topical steroids alone until last year when dupixent was approved by the FDA and prescribed to me. It took a while to get approved but since August I have been itch free.

How does having eczema affect your everyday life?

I have had to greatly limit the activities I participate in due to eczema. I was always into sports. I tried everything in the book (and not in the book) to try to be able to get sweaty in volleyball without having my skin feel like it’s on fire and scratching till I bleed. I love being outside, but if it is too humid or hot, I just can’t be out for long. I can’t do anything like mow grass or be outside when there is freshly cut grass. If I do anything even slightly irritating I have to go inside and shower off right away, or I will be regretting it for days to come. I have always loved animals, but after age 12 it got bad enough where I would have a huge reaction to even a lick from a dog. It’s a huge bummer and I feel like people have a hard time believing my reaction is as bad as it is, but then I take a look at my resume and skin and realize they probably believe me.

I haven’t been able to look at myself in a mirror for a very long time. When I get ready in the morning I will look with a dim light to do my hair and makeup. In public restrooms, I will look down or stand to the side of the sink to make sure I avoid eye contact with myself… Heaven forbid I need to try something on in a fitting room.

Shopping trips usually end in tears. All I see is a terrifying red person. It’s really hard to look at and I imagine it’s the same for other people looking at me.

Other than a kick to the self-confidence, the uncomfortable burning, itching, crawling skin is the worst part. Constant showers to get irritants off, causing dry skin, calling for lays of lotion which burn my skin. It’s an endless cycle.

Do you believe there will be a cure for eczema in the next 25 years?

A cure? I don’t know about a cure, but I think everyone will be able to live as if they don’t have eczema at all. Treatments have already gone from essentially nothing to very specific biologics which can stop itching completely and keep the rashes pretty clear. With the combination of this, and maybe allergy shots, and topicals for the occasional flares, I think people won’t have to deal with eczema in the same way people have before these past 2 years.

What’s the best piece of advice you’ve been given about living with eczema? How has it impacted your life?

I honestly feel like I’ve had to learn everything on my own. The dermatologist provides the prescriptions and the advice to take cold showers and use steroids, but beyond that everything has been trial and error. I’ve never actually met another person with moderate or severe eczema. Everyone has sympathy but the only real help has been prescriptions and allergy testing.

If there were one thing you’d want every eczema patient to know, what would it be?

If you feel like your eczema is majorly affecting your life, get dupixent. Watch for new drugs. Get allergy patch testing.

If your dermatologist isn’t listening to you, try to see a different one. Don’t lose hope, as a ton of new drugs are well on their way!

There are also support groups out there. Places to vent to people who understand. Try Reddit or Facebook. :)

Do you have an eczema or psoriasis story you’d like to share? Feature in our Beating the Itch series by getting involved here.

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