Why Summer Is My Worst Enemy Thanks to My Skin Condition


When I was just 4 years old, I was diagnosed with pityriasis lichenoides (PLEVA, in short). I woke up fine in the morning, but as I got home from school, my mother noticed I was covered with red spots from head to toe. My parents took me to countless doctors and dermatologists, only to be told multiple times they have never seen anything of the sort. Lo and behold, after a few months of being told it was an allergic reaction, the top dermatologist in my country at that time officially diagnosed me with PLEVA, and said I was his first and only patient with this very rare chronic skin condition.

Most (including my parents) tell me I’m lucky to not be in constant pain. And while, yes, I could be considered lucky, that does not make it any better for me. I have spent 15 years of my life ashamed of my skin. Everywhere I go, I get paranoid thinking people are looking at me and wondering what kind of disease I carry (most assume it is chicken pox). Sometimes I do get painful ones that bleed when peeled, and I actually have some scars here and there, and I also get an itchy irritation in summer, but for the most part, it is just a visual annoyance. Chlorine also makes them burn for the first few minutes of being submersed in it, and as a result of PLEVA, I have also contracted eczema.

 

Truthfully, I have a much less visible version of it now, as the outer area of my arms and my whole face do not have any spots anymore, and so it might be hard to notice. After a while, the spots dry out and a white-ish spot is left, but new ones appear all the time. But the paranoia is still conscious. Since there is no cure for it, I have all of my life living like this.

I remember being very young and daydreaming about cutting out the spots with a knife, because I thought having scars would be less of an embarrassment. Throughout the years, I have learned to live with it, as one must do. But I will always wish to have normal skin, just like everyone else. Going to the beach is a pain. The envy I feel for the people with clear, smooth skin is unreal. And although it might seem easy to just ignore the rash, it really isn’t when your whole body is covered in it, every day of your life.

Loving myself has been tough, especially now that summer is coming up. And I still struggle with it, and a part of me thinks I will never be at peace with myself because of it. Throughout my life, I have never met or seen anyone with PLEVA, and that obviously creates a dark cloud over my head. Thankfully, I joined a Facebook support group for PLEVA a few years ago, and it has made me feel less alone.

There is no cure for this, and to be honest, I don’t think there ever will be. The doctor had suggested light therapy, but the rash would just show up again in a few weeks time, and so my parents shut it off.

Maybe one day I will learn to ignore it. But although it has been 15 years, I am so far from that happening that that day seems impossible.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Digital Vision.

TOPICS
JOIN THE CONVERSATION

Related to Pityriasis Lichenoides

woman lying in field of flowers and smiling

Finding Happiness During Traumatic Brain Injury Recovery

In 2011 I was a physical education teacher for high risk youth. One day we were playing basketball and I was accidentally headbutted in the mouth. At the moment, I had no idea that my life would change forever. I ended up losing my front tooth and fracturing my jaw. In 2013 I ended up [...]

What Pride Means to Me as a Queer Woman With a Disability

When I came out as a queer woman, I adopted a new definition of the word pride. It no longer simply meant an allegiance to a sports team or feeling confident in myself, but instead represented adopting a self-acceptance of my identity and my community. Pride to me means you are proud of your community’s history, [...]
22 habits of people with ehlers-danlos syndrome

22 'Habits' of People With Ehlers-Danlos Syndrome

Living with Ehlers-Danlos syndrome (EDS) can present a unique set of challenges. Your muscles may ache constantly, your joints may dislocate or sublux far too easily, and others may have a hard time understanding the often frustrating reality of your condition. This can cause some people with EDS to develop certain “habits” – things they started [...]
blue watercolor image of a woman

Why I'm Afraid to Talk About My Chronic Pain

I don’t “look disabled.” Most of the time. Unless the weather’s gone wild (and I live in New England, so that’s only an afternoon away) or I’ve somehow injured myself, I usually look like a healthy woman. Heck, I don’t even look my age – no one believes me when I tell them I’m over 30. While [...]