When life gave me Vitiligo, I went through the 5 stages of grief:
- Denial (it must be a fungus)
- Anger (why meeee?)
- Bargaining (I’ll give up gluten if…)
- Depression (Can’t face the world with this face)
- Acceptance (Alright, I’ll deal with it)
What was my grief all about? It was about the loss of something very dear to me: my skin pigmentation.
WHAT IS VITILIGO?
Vitiligo is one of the many autoimmune diseases out there (there are about 100 and counting known today). It happens when our own immune system attacks our melanocytes, the cells that produce melanin, responsible for the pigmentation of our skin. Where the production of melanin stops, we get discolored patches. These whitish patches can happen on our face, body, hair, and even inside our mouth. It usually happens before age 20, but in my case it happened in my 40’s, so no set rules there.
Not too many people have heard of the disease. The most famous person affected by it was Michael Jackson. That was his explanation for his massive loss of skin pigmentation. More recently, Winnie Harlow, fashion model and former contestant on America’s Next Top Model, has become the spokesperson for this disease. Her remarkable beauty comes through the extensive Vitiligo patches on her face and body. Instead of hiding the disease, she has incorporated it into her career. Now those patches are her unique signature in the fashion world.
The condition is not fatal or contagious, which is the first thing I say to anyone who notices my patches. However, it is a huge cause of stress and insecurity.
HAS LIFE GIVEN YOU VITILIGO?
If you or anyone close to you has been diagnosed with Vitiligo, you know the chaos it can bring into someone’s life. It disrupts your existence on so many levels. And no matter how many doctors tell you it’s not life-threatening and you’re lucky to be a woman because you can cover it up with make-up, you still want to slip that size 9 stiletto off your foot and hurl it in no particular direction.
I wear size 9 shoes.
I’m fond of stilettos.
Four years ago, I was diagnosed with my third autoimmune disease: Vitiligo; a.k.a. Leucoderma; a.k.a. Areyoueffinkiddingme.
VITILIGO, ARE YOU EFFIN’ KIDDING ME?
So, this is what my skin looks like today, 4 years after life gave me Vitiligo. I took these pictures this week just for you, my friends. This is me, fresh out of bed without a stitch of make-up and no filters, bravely sharing for the first time. I’ll be honest, I debated whether or not I should show my bare face on this blog (or anywhere else, actually). But then I thought, how can I openly discuss my vitiligo without sharing the effects of it? That would be vain and cowardly of me. And don’t get me wrong, I am vain AF (which in this case does not stand for Absolutely Flavorful), but I’m no coward. No, sir. So, here I am! Voilà!
As I already said in my About page, and as you can see in these photos, my Vitiligo has made itself at home mostly on my face because destiny can be one spiteful bitch sometimes (there, I said it). At an age when most of my peers are worried about wrinkles & pores, freezing & filling, lifting & stitching, I’m here obsessing over these funny patches. I just can’t help it. But that is actually the silver lining in my autoimmune cloud, isn’t it? I’m so focused on the status of this disease that I don’t even see my wrinkles and pores. See? Pros and cons everywhere. It’s all in the way you see it, like a Rorschach inkblot.
FIRST VITILIGO SYMPTOMS
Years before my vitiligo spread over a chunk of my face like an oil spill in the ocean, I was working in Brazil and went to see a local dermatologist to remove a suspicious skin growth from my leg. (It turned out to be benign; thanks for wondering). On that occasion, he warned me that I had small vitiligo spots over my body. However, I did not believe him because a US dermatologist had previously told me it was sun damage (a common misdiagnosis). Then in Italy, my nephew was diagnosed with vitiligo, followed closely by my cousin. You see, when it comes to autoimmune diseases, my family has an exceptional genetic curse that spans generations. Still, I wasn’t giving my white spots much thought because next to them I also had dark spots, which worried me a lot more. I even had a couple of those spots biopsied for good measure.
NOT MY FIRST AUTOIMMUNE DISEASE
Before life gave me Vitiligo, I had already been diagnosed with Hashimoto’s Thyroiditis and Psoriasis, proudly following in my parents’ genetic footprints (I got Hashimoto from my mother and Psoriasis from my father). I was already on a very high dose of Levothyroxine (a whopping 175 mcg a day), which is a synthetic thyroid hormone replacement, and I was undergoing annual biopsies of my angrier thyroid nodules (I had 4 total: 2 of them totally pissed; the other 2 just mildly vexed). My endocrinologist at the time wanted to keep the situation under control and make sure I did not need surgery or develop cancer on top of my autoimmune Sundae.
IGNORANCE IS NOT BLISS
In all of this, it never occurred to me that my problems had anything to do with my gut. It was still the Age Of Innocence during which I had blind faith in conventional MDs and believed what I was told beyond any reasonable doubt: “No one knows where autoimmune diseases come from, but they are usually hereditary. There is no cure, and you’ll be taking medication for the rest of your natural life.”
SO, WHAT DID I DO WHEN LIFE GAVE ME VITILIGO?
I went shopping for a thicker foundation. What else? The fullest coverage I could find.
That is the very first thing I did, and I will write a post about my Vitiligo camouflage technique very soon. But then… Then I did something better and life-changing.
THREE IS THE CHARM
With my third (and hopefully last) autoimmune disease under my belt, I finally decided to take my health into my own hands. I could no longer accept the status quo, feeling like a victim of genetic circumstances. So, I did what anyone else in my predicament would and should do: I took to the Internet like a fiend and researched the hell out of my history and symptoms. I visited “alternative” websites, blogs, forums, youtube channels… For the first time, I encountered the expression “leaky gut”, and a whole new world, or should I say microbiome, opened up in front of me.
That was when I finally discovered the connection between autoimmune diseases and gut health. It became clear that simply addressing each symptom connected to my diseases would not give me any lasting results. I had to go deeper, all the way into my gut to restore a healthy balance between bad and good bacteria, while repairing my torn intestinal lining.
KNOWLEDGE IS POWER
That is why I’m sharing my story with you, to empower you to some degree. If you or someone you know happen to be diagnosed with Vitiligo or any other autoimmune disease, finding first-hand information could really make a difference. When this reality was new to me, I felt lost and helpless. But I imagined that someone else had to be plagued the way I was and must have figured something out. Indeed that was the case, and luckily they felt like sharing their experience online.
Hunting down information is the best thing I’ve ever done. And in a twisted way, my vitiligo is a blessing in patchy disguise. Without it, I might have never empowered myself with the responsibility of my own health and gone outside my doctor’s office to look for solutions. In the end, my vanity might be saving the quality of my life. Who would have thought that being shallow could have such deep consequences?
MY CANARY IN THE COAL MINE
That is what Vitiligo is for me these days: an alarm too visible to ignore. Now I’m able to keep tabs on my overall gut health just by looking in the mirror. If the patches are doing better, everything else is doing better, including my Hashimoto and Psoriasis. Along the way, I have learned a lot about the right nutrition and supplements for autoimmune diseases, and it’s making a big difference.
WHAT YOU SHOULD DO IF LIFE GIVES YOU VITILIGO
This year, for the first time since my Hashimoto diagnosis, I am elated to say that my doctor lowered my thyroid medication. He couldn’t believe it, but I could. I had noticed that my Vitiligo had stopped spreading and recently the light patches had even started repigmenting. That’s when I knew I was on my way to recovery.
So, that’s what I recommend you do if life gives you Vitiligo. Make friends with it, ask questions, and let it be the lesson you never knew you needed to learn.
You are an inspiration! Bravo Tiziana
Thank you, Josette! If I can spread some positivity and helpful information about these chronic conditions, then it’s more than worth it 😊
BRAVA, TIZIANA, SARAI UN FARO PER TANTE PERSONE..
CIAO, TIZIANA, HO VISTO IL TUO VISO, AFFETTO DA VITILIGINE, IN VIA DI MIGLIORAMENTO.
BRAVA. CONTIN UA COSI’ .
Sei sempre stata una grande! La vita ci ha fatte ritrovare ma scopro che ti ha messo a dura prova, ma non potevi che vincerla!
Grazie di questa condivisione, Tiziana, arriva al momento giusto.
Grazie di cuore, Annarita cara! 🙏🏻 Mi ritengo molto fortunata, ma so che la frustrazione che sento e’ la stessa che sentono tanti altri in simili circostanze. E’ proprio per quello che ho deciso di condividere questo pezzo del mio percorso. Spero tutto bene e che la salute non ti manchi. Se hai domande sentiamoci! Ti voglio bene 💚
I too have this on my face and it’s spreading. I also developed Raynaud’s over the last year. I need to get checked out for autoimmune stuff, but unsure how…
Thank you so much for sharing this! It helps.
As a fellow Autoimmune Warrior and vitiligo sister, I sympathize with everything you are going through.
Vitiligo and Raynaud’s are both AI diseases, as you know, and most likely have the same root cause. Getting firm diagnoses is very challenging for AI patients. I highly recommend consulting a Functional Medicine Doctor. Easier said than done, but if you can find a good one in your area you’ll start addressing the cause and not the symptoms from the beginning.
Also, keep in mind that nutrition and gut health are often at the core of the root cause for AI diseases. So, pay attention to your gut and food choices; it will help tremendously.
Sending you the best vibes and thank you for your feedback 💚