Hello. My name is Sherrie & I'm an Addict

Dear Reader,

I stand in the shower, eyes closed and arms crossed over my chest, the hot water running down and providing instant relief. I could stand in here for hours. It is the one place I find comfort, relief from the many things that cause me anguish. Rarely do I venture far from home, and when I do, I have to go prepared. A rag, soap and baby wipes. I am an addict. I shower at least three times a day, sometimes more. Once I get out, the healing power lasts less than five minutes and once again I am a prisoner to the chronic, debilitating pain that I hide. It does not matter if I am driving in a car, taking a walk, reading to my children or making dinner-it is always on my mind. It haunts me when I sleep, waking and torturing me. I cannot get out of bed fast enough, only to find myself right back in the shower. I must get clean, renewed and wash away the weight of it all.

 

When I was little, I knew something was wrong with me. I never got a good nights rest and did not understand what was happening to me. It was so commonplace that I thought for a long time that I was normal.

My mom took me to the doctor when I was three. I still remember my little frame, light brown long hair and animal printed hospital gown. After many failed attempts to diagnose me correctly, my parents took me home. As a teenager, this part of my body became my nemesis. I hated, despised and had dreams of removing my flesh with a knife. I did not tell anyone of my secret. People, especially in predominantly LDS communities do not talk of such things. Even today, it is hard to admit to friends or family that I live with constant fissures, pink skin long gone replaced with white, elephant textured, scarred skin. My female anatomy is changing and I don't like it one bit.

I kept my secret hidden for years. I did not even tell my mother. My mom was always open about such things, but since she did not understand what I was going through, I pretended everything was fine. I look back now at my actions and wonder how I had the strength to live in such agony. My life consisted of crouching in the back seat of my car, ducking in dressing rooms at malls, leaving undergarments in random garbage cans in bathrooms and wearing tampons when they were not needed. I would do anything to keep moisture at bay. Even today, I am nervous to go in public restrooms or pools because of infection.

I was disgusted at my body, depressed and alone. How do you admit at such a tender, influential age that you itch twenty-four hours a day and any moisture on your skin or underwear is unbearable? At night I wake up scratching and am not even aware of it. If I don't stop, the scar tissue will get thicker and I will be at risk for skin cancer.

I have heard many times of a woman’s sexual organs being referred to as a flower. I have never understood or thought of it in that way. My sexual organs cause me a mixture of pain and pleasure, nights crying in the shower, a depleted self-esteem, agony, misery, chronic pain and hushed secrets. So many times I have laid awake while the entire house is asleep, crying in my pillow because I have felt so alone. Intercourse usually (but not all times) consists of me pretending I am enjoying it, flinching at the stinging as a new fissure tears and retreating in my mind to a pain free place until it is done and I can roll over with tears in my eyes and hide the pain from my husband. I am not a flower, but rather a thistle. 

I am determined to speak out about my disease, demand more research, find a doctor that listens and will fight for me, learn to appreciate the beautiful, positive things in my life and hopefully document both the ups and downs of living with Lichen Sclerosus. I want to share the experiences with doctors, treatments and the advice I get from a group of women (that I found by complete chance) that suffer from similar diseases.I do not want people to look at me differently or feel bad for me. I am doing this blog to stop the silence, shame and loneliness that this disease causes me and for once be honest, open and completely exposed. In a sense, I am standing here naked for all my readers. I am an open book. I hope that by doing this, I will provide support for other women and let them know that they are not alone.

One day my daughters will understand why their mom gets grumpy, does not like hiking, camping unless there are showers or anything else that causes beads of sweat unless I have provisions. Incite as to why I sometimes gasp when I sit down from pain and disappear without notice into the shower. My toddler who has been diagnosed with LS will have something to read as she grows to a young woman and hopefully will understand why she itches all day long. I will be strong, fight for her and come out of this a better woman if not for myself, but for my precious little daughter. She will not be alone, suffer in silence and not have anyone to fight for her. -S