It’s really interesting. I used to hate my name. Katie. It’s a nickname, I was supposed to be Katherine or Catherine but my parents couldn’t decide on the spelling (my grandmother’s are Katherine and Catherine). So here I am, Katie. I got asked, and still get asked, what my real name is. As if “Katie” isn’t good enough. Funny how it can all start with a name. All my life I felt like I wasn’t good enough and it’s something I still struggle with to this day.
From the day I was born, I was different. I came out extra wrinkly and extra dry and I was diagnosed with atopic dermatitis before I was one year old. This basically means I have severe eczema and I’m missing the latex-y barrier on my skin. I also came out extremely pigeon toed and wore casts for the first year and a half of my life but that’s neither here nor there, just a fun fact. I’m full of those, fun facts. Before I was five I had also been diagnosed with asthma and a plethora of allergies, resulting in many trips to the emergency room and years of allergy shots. When I came into this world I might as well have had a massive sign on my forehead from the day I was born that said, “I’m broken and don’t fit in!” …. that way others would know what I already did.
This section is going to go more in depth about my skin so if you’re squeamish, skip ahead to the IT’S SAFE NOW paragraph. I have a very vivid memory of being three years old and trying to take off my socks. It’s one of the first memories I have. It was Christmas morning, my sister Sarah and I had just gotten this cool cardboard play house that was Yellow, Blue, Green, and Red. I loved it! We played in it all morning until we had to go to my grandma’s house. It was time to change and my socks wouldn’t come off. It hurt. so. bad. I tried to pull gently but they wouldn’t budge. Crying, I went to my mom who tried as well. The cracks in my feet were so deep and had started to weep that the fibers in the socks were becoming infused with them. I had to soak my socked feet in water for 10 minutes before they would even start to come off and even then, it was so painful. Upon finally peeling them off, we discovered most of the cracks were infected as well. I wish I could say that was the only time it happened, but it was an every day occurrence for several years. It started happening behind my knees and where my butt cheeks met my thighs too. If I sat for too long, the weeping would meld together and would rip open when I stood up. I have a memory of being at my grandma’s house when this happened and when it was time to go home, I pretended to be a frog so I didn’t have to stand upright and rip them open. It hurt so bad! I also didn’t want to tell my parents because I was embarrassed. No one else in my family had this problem and I didn’t want to be a burden. I literally frog hopped to the car. This same thing happened over and over and over again throughout my entire childhood and well into my teens. I hardly ever told my parents but I’m sure they knew all along.
The cracks in my feet, inside my elbows, behind my knees, behind my ears, and under my butt onto the backs of my thighs were so painful, becoming infected, and there was nothing we could do at home to soothe them. We tried everything you can buy at a drug store from here to coast to coast (literally, we bought creams online from California once upon a time). Every day was a war taking off my clothes, everything stuck to me and ripping them off was awful. I just wanted to be naked all the time so I didn’t have to feel that pain again. Finally, my regular Doctor (Dr. Squire, he wore snakeskin cowboy boots and had a black ponytail, I thought he was the coolest) recommended us to the Mayo Clinic in Rochester. At five years old, I spent two weeks in the Children’s Ward getting “wet and light treatments”. The first week, you are lathered in cold cream that’s kept in a fridge, wrapped in wet towels, wrapped in dry towels, and safety pinned together so you can still move at least a little bit. You lay in bed for three hours, doing nothing, bored, ashamed, watching the same movies from the Mayo Clinic library over and over and over again. When my three hours were up, I got one hour free to do whatever I wanted. After that hour, I was right back into being lathered with cream that was kept in a fridge, wrapped in wet towels that they tried to keep warm but got cold, and wrapped and safety pinned into dry towels. 6 times a day, for seven days we did this. Day 8 felt like it was never going to come. I was so excited not to be lathered in the cold cream!! What I didn’t realize was that I was instead going to be lathered in tar. Yup. Just like the kind you’re thinking of. You hop into a “warm” bath for 20 minutes that has oil in it, get lathered up in a different oil, lay on a table where they flash you with UV rays for two seconds, five times. When that’s all done, they literally smeared cold tar all over my body. Remember when I said “light treatments”? How convenient they left out the mention of tar. They gave me ugly navy blue sweats to walk around in because the tar would stain any of the clothes we brought. We did this every day for the rest of the week. Writing this now, I feel like such an ungrateful brat. I think about how much my mom sacrificed to spend two weeks at the Mayo with me, how much my dad sacrificed to be the sole provider of my three sisters back home. How much money it must have cost. And we did this several times over the years. I am forever grateful to my parents for not letting me suffer, it couldn’t have been easy for them. For a lot of reasons. And grateful that they dealt with the burden I brought into their household 29 years ago.
IT’S SAFE NOW!! It was during my journeys at the Mayo Clinic that I was told all those allergy shots I was getting weekly were making my skin so much worse than it needed to be, and I got my second diagnosis of Icthyosis. Another skin disease, another autoimmune disease. At the time, I didn’t realize that’s what my eczema was. What it basically means is that it is incurable. I went years with the hope that someone might be able to find a cure and my suffering would end. I wanted to become a pediatrician dermatologist to find a cure and end the suffering kids like me were facing. I wanted so badly to fix myself and to help others. But instead, I have been on a series of steroids for 24 years. With this came other issues. When I was 13 years old, I was diagnosed as steroid dependent. I can’t live without them. If I even try to stop, my various forms of eczema would wreak havoc on my body, back pedaling all my years of hard work to keep it at bay. Being steroid dependent came with another set of issues. My already tortured skin was now being riddled with stretch marks. At the age of 13, I had more stretch marks than anyone I had ever seen. The insides of my thighs are permanently red, purple, and lumpy. More than one person has told me I looked like I was mauled by a bear. During a different event in my lifetime that I will speak more about in our podcast, I was told that I was so hideous that no one would love me anyways. And believing that fucked me up.
I believed I wasn’t worthy of love. I was the baby of the family but often felt like the black sheep, or the burden. I have three older sisters and no matter how hard I tried to make my parents proud, I always felt invisible. I quickly fell into depression and the anxiety followed closely behind. I was scrambling to try and stay ahead of it but when all you see when you look in the mirror is your skin rebelling against you, you quickly lose to that voice in your head telling you that you are garbage, a complete waste of space and that your family would be better off without you.
I never told my mom and dad what I was going through mentally, I was enough of a problem, they didn’t need another medical issue from me - not with my atopic dermatitis, icthyosis, asthma, allergies, and two newly discovered forms of eczema, sebhorric and dishydrotic.
Feeling everything I was, I was lonely. I hated myself and I thought everyone hated me too or should hate me. I was distancing myself from everyone I knew. From my family and my closest friends. I was going through it alone and believed I deserved to be going through it alone. I had this body that was rebelling against me in almost every way. My skin was falling off, I was in pain all the time, I looked flaky, red, blotchy, and disgusting. My skin would weep and look shiny on top of being flaky and blotchy. I wouldn’t wear shorts or short sleeves. I was hiding my body under all these layers that I hated to peel off. I was so miserable, I can’t even begin to describe the hate and resentment I felt towards my body. It was stupid, and ugly, and gross, no one would ever want me, why would they? I shed all over everything I touched. My parents had gotten new furniture and I hated sitting on it because I would leave evidence that I was there. My sisters called me Snake and would continuously point out that my body was gross. I knew my body was gross and they were just confirming that fact. I wanted to disappear and fade into the background. I wanted people to forget that I existed. I had gotten to a point so low that light was hard to see. I didn’t know happiness was a real thing and got so lost in the darkness that I had forgotten the qualities about myself I did like.
I’m not sure what happened but I was 18 something in me changed. I told myself enough is enough. I can’t change it!! My body is not an outfit I can just swap out no matter how badly I wanted to. I’m stuck in this. This cracked, flaky, shedding, stretch marked, ulceritive colitis, eczema riddled, allergy infested, asthma not breathing thing. This thing is my body. Mine. And I’m done letting other’s thoughts effect what it really is. A vessel for my soul. To live beautifully does not mean to have the “ideal beautiful” body, it’s to live your life as you see fit. I decided I wasn’t going to hide my personality anymore. I am sarcasm and jokes and bubbles and sunshine! I LOVE giving compliments. I LOVE getting to know others and their stories and my body does not hinder my ability to do any of that. My body is what it is. I still get mad at it, I still have fleeting thoughts of negativity towards it, but I am working on becoming better on the inside, so who the fuck cares what the outside looks like?!
So here I am… 29 years old, in a body, and that’s enough. I am Katie.