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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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.
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
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...
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
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....
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.
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
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!!
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.
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!
Replies
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
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
your story was inspiring:) thnx for sharing!!
Your story has made me realize that there is a light at the end of tunnel.