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A brief summary of my life

Posted by Patricia Stegall on October 27, 2009 at 1:52am
Hello, my name is Patty and this is my story. Every person has a different story, but for now I am sharing my own. I am 65 years of age. My skin before vitiligo was an olive color that tanned easily. I developed vitiligo when I was 9 years old. I have experienced living with vitiligo for 56 years. My vitiligo began as a white spot on my right knee after healing from a bad scrape. As time went by my vitiligo gradually began spreading down both legs symmetrically. By the age of 10 the white patches had spread to my ankles, elbows and my upper arms. My hair began growing out white at the crown of my head. I felt hurt and sad from the stares and teasing. I cried and pleaded to be taken to a doctor. I was told there was nothing wrong with me and to just hush up about it. So that is what I did and I kept the shame and fear I felt to myself. I didn’t know what was wrong with me. I went into hiding emotionally and physically. I spent so many years trying to cover my white patches with makeup and excessive clothing. It seemed an impossible task, but I kept trying to look normal. As a teenager the white skin began to spread onto my face around my hairline and up my neck. I became white around both eyes and I started using heavier makeup on my face. Someone laughed at me and told me it must be leprosy. That really hurt me and scared me, too. I cried a lot, but always alone in hiding. That was a very hurtful remark that I kept inside me. Mom began to dye my hair that turned white, but we never talked about it or my white skin patches. I never even tried after I was told to hush up about it. I was never able to explain or defend myself. I developed some ways to cope in my teenage years. I used my smile to draw attention away from my spotted hands. I held my head up and made eye contact as much as I possibly could. That was very hard to do, because in my heart I was filled with so much shame and pain. I held in hurtful remarks and stares, but when I got home in my bedroom alone I would burst into sobbing. I felt so defective and even cursed by God during those years. In school I tried to act as if I was happy and normal. However, gym classes were torture because we had to wear shorts and take showers with other girls. I was always worried about how I looked all the time. I wanted to be a cheerleader but did not try out because of all my white patches of skin. I tried to conceal my hands in various ways. No matter how bad I wanted to cry, I would never let anyone see me cry. My tears would wash away my makeup that concealed my white patches of skin. When I was a senior in high school I met my future husband. We fell in love. I talked with him about my white patches all over my body. He was the first person I felt safe enough to talk with about my feelings. He listened and told me I was beautiful. He said he loved my beautiful smile. We dated for a couple of years. He showed me how to have fun. While my fiancé was in college, I worked as a cashier typist. I received some teasing while on the job. I am so grateful that I had a very compassionate boss who comforted me. Eventually my fiancé and I went to his doctor for our blood tests before marriage. I summoned up the courage to ask his doctor about my skin problem. I was finally given a diagnosis for the white patches that had spread all over my body. He said it was called vitiligo, it was thought to be inherited, there was no cure and I just had to live with it. After 12 years of not knowing, I was finally diagnosed, but I was devastated. And once again I held my painful feelings inside me. We married and in 12 months we had a son, who was a beautiful normal baby, despite my 9 months of secret worry and guilt that he may be born with vitiligo. I was so mentally programmed to not talk about my vitiligo. With the pregnancy I lost a lot more of my skin pigments. At that time I was given diet pills by my doctor to lose the excess weight I gained. From the very first pill I believe I became addicted to them. They were amphetamines and they really lifted my low self-esteem. I felt so much more energetic and able to take care of our baby. They made me feel confident. After depending on the amphetamines for 2 years, it was so hard giving them up for a year. I wanted to be safe about having another baby, our daughter. As soon as she was born I was put right back on the amphetamines to lose weight. That was just what I wanted, the feeling of power, the energy and my self-esteem was restored once again. With this last pregnancy I lost a lot more skin pigment and now I had about 75% loss of color. I was ashamed of my white patches and just wanted to isolate with my baby. I abused amphetamine diet pills for over 20 years. Our children became teenagers. It is by the Grace of God that I am alive today. The last years of my addiction nearly killed me from overdosing. I knew I had to stop. May 26, 1989 was the day I surrendered in a chapel at a treatment program. I had a psychiatrist and a psychologist to help me. Withdrawal from amphetamines allowed so many painful suppressed feelings to come to the surface. My secret suffering as a child and teenager with vitiligo came up. Fears and shame came up. Guilt and self-degradation came up. But I was not alone with my feelings. I had the support of my husband and 12 step meetings. Also, I was in group psychotherapy for over 10 years. I grieved all that I had stuffed down inside me as a child, and as a dysfunctional adult. It took a long time to get to the point of grieving my vitiligo issues but I finally did. I had a lot of support in learning to live open and honest. Eventually with a lot of spiritual recovery work I began nurturing my wounded inner child. I began to understand why I did the things I did. With understanding came love and acceptance of myself. It was a very long journey from a young child with vitiligo to where I am today. I am 99% depigmented. That is a huge loss, but I am grateful to be one color now. I am free to be me, no more hiding. I still have vitiligo. I want to bring awareness to the public of what vitiligo is and what it is not. It is an autoimmune disease that results in the loss of skin pigments. It is not infectious or contagious or a loss of skin texture. I am sharing my message of hope and freedom from a self-defeating lifestyle with others. This has been my desire ever since I received healing from my emotional and mental issues. However I have not been cured of my vitiligo. But now I am grateful and willing to talk about my vitiligo. I share my experience, strength and hope with people of all colors, including unique friends with vitiligo. I do this by being a member of National Vitiligo Foundation, the Vitiligo Support International organization and the Vitiligo Friends website. Still to this day they continue to be my touchstones of support. I have become a spiritual and creative person who loves nature, hiking and the arts. Photography, writing, drawing and even Christian clowning brings me many blessings. I love Bible studies and attend creativity workshops quite often. I enjoy being with other people. My Higher Power is God, not vitiligo and not drugs. Each day is a gift from God and every breath is a blessing. Hugs and loving thoughts from Patty HIGHLIGHTS OF MY RECOVERY: 1989 Became a member of the National Vitiligo Foundation 1989 Began psychotherapy and recovery work 1991 Made arrangements and facilitated a NVF booth at the WAKR Health & Fitness Expo, Chapel Hill Mall, Akron, Ohio 2002 Attended my first NVF Friends & Families Conference in Cincinnati, Ohio 2003 Joined Vitiligo Support, an online support community 2004 Attended my first Vitiligo Support Conference in California 2006 Attended a regional Vitiligo Support Conference in Chicago 2006 Attended NVF Conference in Cincinnati 2007 Attended VSI Conference in Williamsburg, Virginia 2008 Attended VSI Conference in San Antonio, Texas 2009 Became a member of Vitiligo Friends, an online support community 2009 Started a Northeast Ohio Vitiligo Support Group I continue to be a member of all these communities. Patty Cuyahoga Falls, Ohio 44221

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Replies

  • HADIZA ADADO May 26, 2010 at 10:50pm
    Hello Patty. I read with deep feelings your story. You are ok and by now all is well i believe. You have surely come along way.Take care and stay blessed.
    • Patricia Stegall > HADIZA ADADO May 31, 2010 at 2:27am
      Hello, Hadiza
      Welcome to Vitiligo Friends. Thank you for reading and commenting on my story. I have come a long way, but I still have vitiligo and I still have my moments of sadness. But I will never give up hope for a cure, especially for the sake of the children with this disorder vitiligo. Having acquired vitiligo when I was 9 makes me especially sensitive to the children with it.
      Sincerely,
      Patty
  • Chris Hansen May 17, 2010 at 4:14am
    Patty: Thanks for posting this story. I think it's one everyone of us can relate... I was fortunate enough not to have this as a child. I can only imagine how you must felt growing up and in my world it was a disease that was never heard of... until I started getting a couple of white patches in my late thirties... Never really amounted to much until my late 40's, early 50's. I'm now 58. So, thanks. I think you make us all feel much safer and sure about ourselves...We know we have someplace to turn.. God Bless you and everyone who has to live with this...
    • Patricia Stegall > Chris Hansen May 17, 2010 at 4:29am
      Hi Chris,
      Vitiligo friends is a very good place to come and share your feelings, whether up or down, and receive support as well as give support to other friends. Are you doing any treatments? I can't share any experience in that area, but others here are. Enjoy connecting with others here. Thanks for reading my story.
      Here is a friendly ((((((HUG))))))
      Patty
  • anna reavis May 16, 2010 at 6:18am
    Thank you for shareing your story. My skin is all one color now after many years of having spots. I am 46 yrs old and have had this skin condition since I was 9 and people still make comments about how white I am and tell me I should go tanning. How I wish I could. But I try to look at it that it could be worse and I could have something seriously wrong with me. GOD BLESS YOU....
  • Ali Marie May 15, 2010 at 10:47am
    Your post gave me chills, because minus our age difference and birth of children, I feel we have the same story. I am printing out your story with all names erased and showing it to my doc, who put me on phentermine 2 months ago for weight loss. I'm hoping this may shed additional light on what has been eating away at me for most of my life.
  • Cawan May 15, 2010 at 6:04am
    Thank you for sharing your story. Please feel free to always express your true feelings. Don't apologize when u are not feeling well. It is ok! Take care Cawanda
  • teh ben March 11, 2010 at 5:58am
    sad story:( as much as i can relate, i didnt know vitiligo can affect someone SO much, and bring them down for many years. Ive had vitiligo for 7 years, and i just got used to it i guess.
    your story was inspiring:) thnx for sharing!!
  • Karen Lofton February 28, 2010 at 7:22am
    Hi Patty, I read your story and I am really touched by strength and determination to overcome vitiligo. Mines did not start till I was about 22 and then it got worse once I started having kids. I don' t try to hide it because it so visible especially on both hands. Every time I try to accept what I have, other people brings me down. I get people staring and especially people that are just rude to me. They usually don't want to speak to you or they would act like they don't you know when in public or when other people are around. It really hurts because I try to make friends. I would start off by saying "hello" and even just saying that they just look at me and act like they are too good to speak to me.
    Your story has made me realize that there is a light at the end of tunnel.
    • Juan Carlos Parra > Karen Lofton March 4, 2010 at 9:39pm
      My friend people that reject you for that! they are morons thanks god you know already how is their heart! Believe me you don't want them around you! You are better than them!
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