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From ‘lobster boy’ to finally loving myself

After a serious medical scare, I ditched steroids for good. My decision may not be the right choice for everyone. But it helped me understand that we have to advocate for ourselves, even if it means going against the grain.

From ‘lobster boy’ to finally loving myself

I don’t remember not having eczema. It’s always been part of my life. I know firsthand the difficulties and frustrations that come with coping with this disease.

Millions of Americans (and millions worldwide) suffer with atopic dermatitis, mostly in silence. It’s extremely challenging to explain the exact feelings that we have to people who are not aware of the situation that we are all in.

Of course, there are people who have milder cases and some that suffer from more severe symptoms. I happen to be one of those severe cases – 90% of my body has been affected by eczema over the years.

We just want our voices to be heard

I feel that the individuals who share the same experience as I are the ones that are heard the least. Our voices don’t seem to be heard much. The mainstream medical community simply does not have the answers that we desperately need.

And that’s not a knock directed towards doctors – it’s just the simple fact that eczema is underrepresented and misunderstood by the majority of the population.

It isn’t easy to talk about what we go through, but it’s extremely important to tell the world our story. The time has come for a bigger push for answers, a bigger push to give us the lives that we deserve.

The goal of me telling my own story is to hopefully give some insight and understanding to those who don’t know or to those who are willing to learn about this disease. This is the life many of us live, and this is the story of my struggles and what I believe we can do to turn the tide in the right direction.

Steroids led to a serious medical scare

I won’t go into the entirety of my medical history, simply because I’d be writing for weeks. But I will say that I’ve seen countless of doctors in my time (dermatologists, allergists, chiropractors, etc.) and have tried every medication known to mankind.

Spoiler alert, my eczema never went away. Topical and oral steroids were a normality in my life for years and years. I never questioned the medical “care” that I had been receiving my whole life. Unfortunately, that ignorance led to the formation of a tumor in one of my adrenal glands.

It was freshman year of high school, and the tumor caused my skin and overall health to go completely insane. I was made fun of for the way my skin looked, it was red and inflamed 24/7. “Lobster boy,” “frostbite face,” and “lizard” were common jabs I’d get from fellow students (clearly ignorant of my situation).

A trip to my pediatrician led me to an appointment with an oncologist, who diagnosed me with the tumor and eventually took steps in order to remove the adrenal gland completely. For a while my life went back to normal, or as “normal” as a life with eczema can be.

You’d think that after this health scare someone would’ve linked the tumor with the ungodly amount of steroids I’d been given my entire life. Nobody did though, and I continued down the dreaded path of doctors’ appointments and steroid use.

Fast forward to a year ago, and my symptoms began to escalate month by month. As my condition worsened, the steroids became more plentiful and increasingly strong. It got to the point where I was forced into urgent care about once every other week.

My life had fallen apart. Relationships dwindled, my mood was perpetually ruined, and I couldn’t even show up to my job on a consistent basis. I was helpless, utterly and completely helpless.

Taking the natural route was the right choice for me

I decided to take a stand for myself and completely ditch the never-ending loop of toxic medication. The withdrawal symptoms from these heavy pharmaceuticals were intense. My body had become addicted to the very drugs that were hurting me internally (physically and mentally).

I’m still on the path to recovery, but my life has changed for the better. I’m completely off all medications and creams. I decided to take a more natural route to my ailments. My skin is slowly getting stronger, and I have cleared about 30% of the disease already.

I truly believe that the way to healing is not by masking the symptoms, but rather eradicate the disease at its source. This is not to tell you that you need to follow in my footsteps, but I implore anybody dealing with the disease to really take a step back and rethink the way you’ve been told to treat eczema.

I’m fortunate enough to be able to share my story, and I believe my future is bright. My advice is to be your biggest advocate, do what’s best for you, and above all, stay strong.

Bailey Losa is a 20-year-old eczema warrior living in Miami, Florida, who has been dealing with eczema “practically my entire life.”

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