This past April, my ten-year-old son Titus was diagnosed with vitiligo after he woke up with white patches on his face during spring break. Two months later, I was also diagnosed after the doctor noticed loss of pigment around my eyebrow and upper lip. The months since then have been quite the emotional roller coaster, both as the mother of a vitiligo patient and then as a patient myself. Here are just a few of the emotions I have experienced.
We carry in our hearts our life history, memories, and experiences; our current realities of who we are right now; and our hopes and dreams for who we might become. Vitiligo is changing our current reality and taking from us the future as we imagined it. How we knew ourselves is dying, and I am grieving that. Anger, sadness, and depression are all normal expressions of grief, and I have experienced all of these.
Vitiligo introduced a new and unexpected present and future into our lives. Any illusion of control we had over our future now includes a wild card called vitiligo. I easily become paralyzed with fear if I imagine all the possible ways we might experience unkindness from others as our vitiligo progresses. One of my favorite vitiligo models, Bashir Aziz, has a quote from Michel de Montaigne on his instagram account: “My life has been filled with terrible misfortune; most of which never happened.” I love this reminder that sometimes our runaway imagination can be more terrifying than our reality, and it prompts me to put aside the future and be fully emotionally invested in my right here and right now.
A vitiligo diagnosis is accompanied by a huge learning curve and an enormous number of decisions to make: Which doctor should we see? Should we pursue treatment? Which treatments are effective? What are the side effects? What are the costs? How do we tell our child? How do we walk the line of supporting our son and giving him a safe space to talk about vitiligo without scaring or burdening him with fears or concerns he might not have considered? These are just a few of the decisions we have had to make about vitiligo, a condition we barely knew about and couldn’t pronounce just four months ago.
To my surprise, vitiligo has prompted me to evaluate my life and ask, “What kind of life do I really want to live?” If our future life in public will include stares and questions from others, then I want our home and family to be a peaceful haven. This has led me to evaluate the pace of our our family life and cut everything motivated by people-pleasing and, other than work and school, continue only what we really value and enjoy. This summer we cleaned out our things to keep only what we really like and use. Why? Because we want to spend less free time maintaining our home and more time with friends and family doing things we love.
As I have faced the reality that my appearances are about to change, I have been forced to reckon with all the messages I have internalized from our culture about my worth and voice as a woman. I find myself abandoning rules made for me by nameless, faceless outsiders. Who are these strangers I’ve allowed to determine my beauty and my potential? This is MY life, not theirs. I will choose my worth, my voice, my beauty. My mantra has been, “If they are going to stare, I am going to give them something to look at.” This attitude has been a really fun inspiration as I’ve cleaned out my closet, updated my makeup, and visited my hair stylist.
My New Daily Practice
Living with vitiligo is hard, and I have found that this is not a life experience I can just blow off or power through. I have had to become very self aware of my emotions so that my fears and frustrations do not affect the way I treat my husband and my kids.
I’ve started asking myself, particularly before the evening, when our whole family is together and tired and hungry: “What are my emotions right now? What triggered those emotions? What am I going to do with that emotion?”
I write the answers, or even quick code words for the answers. Here is an example from our summer break: “I feel afraid. We bought school supplies today and it reminded me that I feel anxious about my son’s new school year. When we get his teacher’s name, I will email him or her to preemptively explain vitiligo. My son and I can plan a meet up with a couple of his school friends each week so that any appearance changes over the summer won’t be a shock.”
I am finding that this simple act is enough to deflate the emotion so that it doesn’t take over my life and my relationships with my family.
What emotions have you experienced as you navigate life with vitiligo?
Sara is vitiligo mom and patient providing support, community and awareness for vitiligo in Phoenix, Arizona. Her and her son, Titus, were diagnosed in the spring of 2018. Find her on Instagram at @vitiligofamily.