“increasing daylight, warming temperatures, the flowers begin to bloom… some track the beginning of seasons by recording animals’ behavior and the way plants grow… for me, it’s the look and feel of my hands what reminds me that spring is here.” -Ana Myers
Ana introduced herself to me recently on email, after she read the article in The Atlantic about dermatographia and Skin Tome. She has photodermatitis and has made some beautiful photographs and paintings of her skin. Rather than let her skin condition keep her inside the house (basically, she’s allergic to sun), she’s developed a positive way to view the condition, and figured out how to be outside with proper sun protection.
She agreed to do an interview for Skin Tome, and shares so much about her inspiration and positive outlook.
Ariana Page Russell (APR): Can you please tell me a little bit more about photodermatitis (in your own words, like how you describe it to people)?
Ana Myers (AM): Photodermatitis is a skin allergy to sunlight and I have a very visible and aggressive form of the allergy. The best way for me to describe it is by comparing it to a sunburn times 3 — once the skin is exposed to the sunlight for a long period of time, it becomes irritated and itchy, then tiny blisters or bumps appear. The itch escalates, so I start scratching (this can become uncontrollable) until the skin breaks and eventually bleeds. The blisters dry out slowly by themselves or with the help of prescribed creams. Oftentimes, while it’s healing, my skin becomes itchy again, so I scratch and break the scabs, which impedes the healing process. Once the scabs heal completely, they leave dark brown scars. Sometimes there aren’t blisters or bumps on the outside, but a type of internal bruising (red color) that itch uncontrollably until it hurts. My immediate solution when this happens is to apply cold compresses or to apply ice cubes directly on the skin. Photodermatitis can be genetic — you can be born with it (as in the case of my older brother), it can start early in life (as in my case), or it can appear once you are an adult (as in the case of my older sister).
(APR): What was your initial reaction to having this condition, and how has it changed over the years?
(AM): I’ve had photodermatitis since I was a 3-year-old. Growing up with this condition was a challenge, because of the lack of knowledge my parents and even doctors had about the condition at the time. I was never given a precise diagnosis until I was about ten-years-old. With limited medical resources available to help us manage the condition in a knowledgeable and healthy way, my skin damaged severely. As a young girl I believed, and often heard my parents and doctors speculate, that it was simply a matter of my scratching that caused the problem and if I simply “stopped scratching” the problem would be solved. I felt confused, alone, and even ashamed… I thought it was my fault.
Over the years I have realized that this was never my fault, nor did I cause it and although this is an inherited condition, I cannot blame my parents, my genes, or my circumstances. I have realized that skin disorders are quite common and many people still don’t know much about them. I feel better now that I am able to understand and accept my skin condition. After all, it’s what makes me…Me!
(APR): Yes exactly, it makes you YOU! But that must have been terrible to think the itch was your fault as a child, then good to eventually acknowledge that nobody is to blame. How does it make you feel to have photodermatitis now?
(AM): Uncomfortable most of the time. Not only because my skin feels irritated and itchy (especially during summer), but because I often encounter people staring at my hands, arms, or legs. I have to constantly remind myself that the person I am is who I am in the inside, and not what I look like from the outside. …Sometimes it makes me feel invincible — if the biggest star in our galaxy (a.k.a. sun) hasn’t been able to burn me all up and defeat me, nothing will! Other times…it makes me feel like an exotic beautiful creature 🙂
(APR): I love that–you are an invincible, beautiful creature! So, other than this wonderful point of view, what else have you been able to accomplish by having this?
(AM): My biggest accomplishment was to talk about how I really felt towards my skin condition. I was able to turn those harsh feelings into something beautiful — finding the beauty within photodermatitis and eventually writing and illustrating a book. Studying, researching, and reflecting about my skin condition inspired me to celebrate and appreciate my skin for what it is — the largest organ on my body. I’ve been able to discover so much not only about my skin, but also about myself and my emotional health. I’ve also been able to test and prove that despite my skin’s appearance, I can be a mom, a wife, or a friend that loves and laughs just like anyone else. And I’ve been able to focus more on real, meaningful things in life — the simple joy of cooking a meal for my family or going for an afternoon stroll seems much more beautiful today than it did years ago.
(APR): Is there anything that you find inspiring about your condition?
(AM): Everything. The way my condition was handled when I was a little girl inspires me to be a better mom — more open to my kids, always willing to share with them my own insecurities, fears, and dreams. The way people often misjudged my scars inspires me to be a better person and not to look at others in ways that could make them feel uncomfortable. It has also inspired me to find and focus on the real beauty within me, from every pore, and every scar, and to continue working on accepting myself just the way I am.
(APR): Wow, that’s such an amazing way to transform your condition into a positive experience–for your kids too! What are pros and/or cons of the condition?
(AM): You can’t spend much time out in the sun without any protection (sunscreen, long sleeves, a hat, or light-colored clothing for example) — more than thirty minutes in the sun provokes a skin reaction within hours. Activities such as going to the beach, amusement parks, outdoor festivals or any other outdoor activity becomes a challenge, especially during the summer months.
I must wear sunscreen every single day and it should be applied at least 30 minutes before heading outside, which can make my morning routine a hassle and can delay any spontaneity.
Scratching has always been quite hard to control — I end up bleeding most of the time and quite often the blood gets on my clothes. It takes a long time for the broken skin to completely heal and when it does, it leaves dark brown scars behind. Heat is something to watch for too — a cozy car or house during the winter months can also trigger the itch.
There are certain foods I am supposed to avoid — limes, celery, and coffee to mention a few. Which in my case happen to be some of my favorites, so it’s been quite hard to give them up completely.
While people can be really thoughtful when asking about my skin, at times they can be rude too. Although, whichever way they ask, I always see it as an opportunity to share my knowledge with others, and sometimes even learn about other skin disorders.
(APR): Thank you Ana. I really admire your positive attitude, generosity, and willingness to share your experience with others, and how you show the beauty of your skin.
Images courtesy of Ana Myers. The three photographs above illustrate the stages her skin goes through with sun exposure.
Photo #1 shows the early days of spring, photo # 2 right in the middle of summer (where the itch can be severe), and photo #3 shows her damaged skin with the dark brown scars left.
For more information about Ana and photodermatitis, and to view more of her lovely artwork, check out her beautiful blog.