Monica – A story to inspire hope

With the agreement of our patients, we decided to share some stories — experiences that may help many people rediscover hope.
This is Monica’s story, who discovered she had vitiligo at the age of 40.

“I’m sorry Monica, it’s vitiligo.” The dermatologist at the hospital in my city had finished examining the white patches covering my décolleté and lightly surrounding my eyes. From the tone of his voice and the look in his eyes, I sensed a genuine feeling of closeness toward me — something I would carry with me in the years to come as a sign of gratitude for the humanity he showed.

Not knowing what this disease meant for me, I reacted in my own way, somewhere between naïve and playful, asking him: “Oh, is it the same thing Cossiga had?” remembering that famous politician whose face and hands were covered with strange patches that I used to see on television when I was a child.

It quickly became clear that there were few treatments, mostly aimed at limiting the damage, such as phototherapy and supplements. My second reaction, after reading the ingredients of those supplements, was surprise because, rich in antioxidants, they promoted skin health and beauty. Jokingly, I thought to myself: “One day I’ll be an elderly woman with patches but youthful-looking skin!”

From that moment on, I understood that I had to take care of myself to face this new reality that carried an uncertain future with it, together with the idea that I would do everything possible. I immediately began following what had been prescribed to me, thinking that this event could become an opportunity to break my mental patterns and habits: to change something in the way I lived my life, always rushing, always trying to do a thousand things. In my mind, the possibility opened up to make space for what made me feel good… slowing down and taking care of myself! So I completely changed the way I managed my daily life. I finally took the chance to enroll in a short ballet course (my lifelong dream, revived after the age of 40!), I dedicated myself to physical activity, Pilates, planning trips, and making the effort to go to the beach, brave and determined like a warrior, showing my patches to the sun and to other people.

Every now and then I would ask those closest to me if they noticed anything different about me, and the answers I received made me experience conflicting emotions: I felt relief because, in the eyes of others, I was still the same person, so the patches were not the first thing they noticed about me — but also discomfort, because then I realized that the fear of being watched and judged existed mostly in my own mind.

I want to say something fundamental: I have never hated this disease. It frightened me, I still fear it, but I respect it. I try to keep it at the right distance.

Sometimes it makes me feel ashamed, embarrassed, as though I am somehow “not right.” This is why I believe that the people who live beside you (as my husband and my son have always done) play a meaningful role — reassuring you, reducing feelings of fear and discouragement, reminding you that you are still yourself, that it is a change that “does not change who you are.”

One day, in the beginning, I happened to see this disease for the first time on the body of an elderly woman: I began sweating and felt a blow to my stomach. I saw it again some time later on the body of a woman I knew, my own age: she was completely covered in patches, transformed, I had never seen her like that before… even her gaze was no longer the same, sad and withdrawn.

Looking through old photo albums, photographs from my past, it feels as though my life is divided into two stories separated by a line defining time “before” and “after” the disease crept in: pictures of me with no trace of “imperfections” (the patches), and then photographs from a certain moment onward where there is me with the patches, covered by scarves, long sleeves even in summer, while small spots appear on my face that, although I tried to hide them, remained visible depending on the light and the distance from the camera.

Even though the patches sometimes stop me from feeling spontaneous and free to choose how I want to live, I recognize that this disease has taught me to set priorities, to let things go, and to better understand the suffering of the patients I meet every day at work. Through my experience as a “patient,” I understood how important it is to offer understanding, listening, and a place where hope can remain alive.

I therefore chose to see the problem from another perspective as well: after all, how else would I have discovered, through further medical tests, that I had Hashimoto’s thyroiditis?

But it is not always easy to maintain this perspective. There were moments, especially at the beginning, when I poured my anxiety and uncertainty onto the people closest to me, disguised as requests for help or demands — asking them not to upset me because, as I said then, stress would worsen the situation. I did not like that side of myself asking for help in this way; it was unfair to me and to others.

Then began the so-called “journeys of hope” (which I joked about as well) toward northern Italy while waiting for the release of a miracle drug that never arrived. But even then, I still had not fully understood this disease.

I truly understood it when fear arrived, a few years later, as the patches spread to my arm, my hands, near my mouth: “she” had crossed the mental boundaries within which I had set the limits of my tolerance and the illusion that I could control the disease however I wanted. But where did it come from? Who did I get it from? I often asked myself, uselessly. The sudden worsening made me think back to the expression on the doctor’s face during my first consultation… and at that moment I understood, and in my heart I felt grateful.

The anxiety I carried inside pushed me to experiment with inappropriate and even painful treatments that only created another problem on top of the problem. One summer, I covered myself with shirts and long sleeves to hide the “ugly” parts: I preferred to suffer from the heat rather than let anyone see them! That same year I bought (and never used again) a camouflage product. I thank all the people who noticed but never asked me anything.

I sincerely thank my dermatologist friend who encouraged me to change direction in my “journeys,” guiding me instead toward the Tyrrhenian coast.

Seeing my images under blue light during the first consultation felt like an icy shower: I became aware of my reality and, although it worried me, I also felt a sincere sense of liberation. Faced with those images, I could only decide to move forward and “roll up my sleeves.”

Even before that moment, I had sensed that I was not walking the right path, and knowing the truth pushed me to react. The situation was there in front of me in all its seriousness, but beside it there was also help and a clear, reassuring, scientifically grounded explanation that strengthened my convictions and my trust.

Every day (nine years have passed in total) is a commitment to oneself, a sacrifice, a hope. The treatments prescribed by the doctors following me and their positive encouragement are leading to progressive improvement and results I never expected. I no longer obsess over complete healing or hiding as I once did: the patches remind me that if I have become a better person, I owe something to them too.

Today, if I could speak to them and if they could hear me, I would say: “Thank you, you have been useful to me, truly. But I think the time has come for you to leave because I have learned. And if some of you wanted to stay with me, without causing too much disturbance, I would still accept it — we could coexist.”

P.S. I recently met again the woman my age. She is truly much better now, you can barely see anything anymore… I found her peaceful gaze again.

Monica