Updated: Jul 10
| This is the 98th story of Our Life Logs |
I was born in the early 1990s in Medellín, Colombia. I had a happy childhood living with my older brother and my mom. My father was never in the picture, but my mom loved us with the strength of two parents. My fondest childhood memories are of me playing outside in the streets with my neighborhood friends, laughing and running under the sun. Life was normal in my early youth. It wasn’t until I was 12 years old when things began to change.
When I was 12, I noticed that I was itching more often. Patches of my skin began looking scaly and hived, no matter what my mom did to try to soothe the blotchiness. This baffled her. She took me to a doctor to be evaluated. I just remember sitting in front of the doctor as he reviewed my test results. I watched him fiddle with his glasses. Finally, he pulled the frames off his face, and looked at me with serious eyes. He said, “You have a disease. It’s never going to disappear from your body. You will have to deal with it all your life.” I don’t remember much of my feelings after this moment. I remember my mom hugging me, and I said to her, “mom, I just want to walk and walk then get an ice cream.” I needed time to process this new fact in my life.
The disease I was diagnosed with is called Chronic Atopic Dermatitis. It’s similar to eczema, but more intense. It causes my skin to become excessively sensitive, which leads to oozing, itching plaques on my skin. Many external factors irritate my skin, including sun exposure and going swimming for too long. Due to the severity of my condition, and the fact that it is hereditary from my family, the disease is incurable.
For the first three years after being diagnosed I lived with the problem, finding little relief from preventative measures. My skin’s sensitivity kept me from spending time with my friends, especially if they wanted to go outdoors. If I did go outside for any length of time, my skin would flare up and become extremely irritated. So, I secluded myself. I didn’t show my legs, arms, or even my face because it was all covered in itchy, blotched skin. It looked as if I had deep bruises all over my body. I didn’t want to be seen. I wanted to get better, but I didn’t know how, and I didn’t have much hope.
People stared every time I went out in public. Some people wouldn’t even sit next to me out of fear that I was contagious, even though my disease is not. I once had an incident on the metro system when a woman saw the scars on my skin and began bombarding with me questions. She pestered me, “What’s wrong with you? Have you seen a doctor? Did you do this to yourself?” I tried to ignore her, but she followed me, continuing her interrogation. This woman was drawing the public eye to me, and in that moment, I wanted to isolate myself forever.
Despite the ostracization, I did make a few friends in school that stuck by my side. My best friend would always stand up for me or call someone out for staring. When I felt ugly, she assured me that I was beautiful and that physical appearances didn’t matter anyway. Sometimes, I even believed her. I’m forever grateful that she came into my life because I don’t think I could have gotten through those years without her.
By 15, my mom had begun taking me to new doctors, searching for a treatment that could give me some sort of remedy and help with my appearance. Many of them prescribed medicines, but my condition didn’t really improve. I even had one doctor tell me that I may not live past the age of 25 because of my disease. Hearing that shook me up for months. Was I living on borrowed time?
Eventually, the doctors suggested UV therapy to reduce the inflammation and itching. I agreed to try since nothing else was helping. This was a risky procedure, as overexposure to UV rays had potential to lead to skin cancer or make the rashes worse. I took the risk anyway, but it was terrifying. Imagine being forced to strip down naked and sit in what looks like tanning bed, while you’re examined and picked at by a crowd of doctors. The treatment also needed to occur frequently, sometimes, as many as three times a week. I remember thinking to myself, will it ever stop? I’m just a teenager, will I ever be normal again? Will I ever see progress? It was a disheartening treatment to go through. I had been patient, but I did get the results.
I started college in 2009, majoring in social communication. While I was in school, I became friends with a guy who saw my condition and immediately had a recommendation for me. When I told him that I had been doing UV therapy, he shook his head. He said he knew a hospital that could help my conditions through injections. I was hesitant at first, but I explored this option and agreed to begin this new treatment. It was a lot less painful of a procedure, though it had to be done more often. Fortunately, I could perform the daily injections at home. I had to inject my arm once a day, which was better than sitting under a UV light for over an hour. I continued with this treatment for five years, and by the end of it, the results were astounding. The inflammation was gone, and wounds had stopped spreading like reddened trails across my body. All that was left were the scars.
As my body changed, so did my sense of self. I began to smile more often and actually spend time with my friends without feeling anxious. Each time I looked in the mirror, I saw myself. While some of the old wounds healed, I still felt like my skin was damaged. I played around with the idea of getting tattoos to cover my scars. After my doctor gave me the “OK,” I marched to a tattoo parlor, ready to cover up some of the scars, and all the painful memories they held. I now have six tattoos. Each one a source of comfort and beauty that allows me to live fearlessly.
As of 2014, I no longer need to take injections. The day the doctor gave me the news was the happiest moment of my life. My heart jumped, and I felt alive again. I could finally live my life without the disease constantly at the front of my mind. I could go out on dates and not have to cancel because of skin flare-ups. It could simply be. While I found a method to treat my skin disease, it’s not completely cured. I still check with doctors to make sure some of the heavier symptoms haven’t returned, but even so, I feel victorious.
I wish I could say that the story end there, but unfortunately, life isn’t so smooth. In 2016, I developed fibromyalgia that caused deep pain underneath my bones. It was so frustrating to have another part of my life continue to be. I was able to get proper treatment and medicine, so it’s not as excruciating these days.
The same year I got fibromyalgia, I met my amazing boyfriend that has kept me motivated and confident. I told him about my disease very early on and he was very supportive. When I’m having a bad day where I’m worrying about unhealed scars, he is always there to give me advice and lift me up. He says small things to encourage me like, “You were so strong today. I’m proud of you” or “Your skin feels very soft.” I like hearing about my soft skin because for so many years, soft skin wasn’t possible for me. He makes me feel lucky, even on my bad days.
Life with clearer skin has been blissful. I’m more confident. I feel good about myself. I can take pictures and show my skin without the fear of receiving negative comments. It may feel like things will never get better, but with perseverance and faith, it usually does. I’ve learned the importance of patience, a lesson that has made me a better person. One doctor told me I wouldn’t live past 25, but I’m 26 now. You never know what will happen. My determination helped me find relief after years of suffering. I’m so glad I kept up my search because I finally feel beautiful, inside and out.
This is the story of Ana Maria Sanchez
Ana, 26, lives in Colombia where she works for a global technology company. When Ana was 12, she was diagnosed with a severe skin disease, and spent the rest of her adolescence avoiding the eyes of others and avoiding the public. After receiving proper treatment, she was able to recognize her own beauty. Ana loves photography, writing, and her job. On the weekends, she teaches classes about social media. Ana plans to get more tattoos in the future. She’s hoping to fill up both of her arms with flowers to go with her many animal tattoos she has already gotten. She hopes to learn another language in future. Today, Ana lives a happy, prosperous life.
This story first touched our hearts on June 15, 2018.
| Writer: Kristen Petronio | Editor: Colleen Walker |