[Writer, activist, model and influencer] When I had my first period, I discovered a new incredible wish: experiencing menopause. It might sound incredible and absurd and today I think so, too. But when the long awaited menstruation finally arrived and my mom went around shouting: “You’ve become a woman”, I was in the bathroom crippled by pain. That year, I had my period three times, which is the number of times I was forced to go to the emergency room. Because for me, periods didn’t only mean blood, but also fainting, throwing up, unspeakable pain that forced me in bed for days on end. After a couple years I discovered that my mother had cancer. To let me relax, she sent me on holiday with my boyfriend at the time, I was 16 and that holiday was the beginning of the end. A true nightmare, though I didn’t know it yet. I had my first episode of cystitis. Luckily, or so I thought at that time, my boyfriend’s dad was a doctor. When I explained my symptoms, he prescribed an antibiotic and sent me to the pharmacy. I was so happy. I no longer had to go to the hospital. I no longer had to hear that my pain wasn’t real, that I was a bit stressed, that I was complaining, that I had a low pain tolerance. It was enough to have a prescription and to ingest two doses in the evening before bed. So that’s what I did. When I came back from that holiday, I had another episode of cystitis, then another and another, and another. For eight years I heard people tell me that there was nothing wrong with me, that I was prefectly healthy, to the point that the pain had become Giorgia. Giorgia and pain. We were one and the same and it has been my most devout companion. When lockdown started, I could no longer hide my pain and those insides that burned as if I was on fire. And desperation led me to do something that, usually, is really not recommended, and that is looking up symptoms online. I spent my nights sitting in the bathroom. The pain was so strong that I had scratches on my thighs because while urinating I felt unimaginable pain. I developed a fever and gooseflesh. I spent these nights bleeding out and looking up symptoms. I entered one and looked at the first ten results. I entered another and looked at the first ten results. That’s how I ended up on the website of an association and there, for the first time, I read the word vulvodynia. “Vulvo...what?” you’ll ask. That was my reaction as well. At the time, Google offered no more than five Italian results linked to the word vulvodynia. So I started reading, reading the stories of other patients, and I recognized myself in every symptom, in every story, in every experience. And so I walked backwards: instead of feeling pain, going to the doctor and getting a diagnosis, I got to know the illness, looked for a doctor capable of making a diagnosis and, most importantly, providing treatment. And so it was. After eight long years, I finally got my vulvodynia diagnosis. For most people, the moment of the diagnosis is a sad, painful and frightening one. For me, it was the biggest relief of my life. I had never felt an emotion that powerful. I walked out, sat in the car next to my mom and started crying like a child, saying, “I was right”. That pain had a name. Giving names to things is very important, because language shapes reality, it allows us to give a real space to our pain through a name. If we didn’t have names, others wouldn’t be able to call us. And that’s what I did for all my other illnesses: pudendal nerve entrapment, endometriosis and adenomyosis. When I was in the hospital, the first time I said: “It could be endometriosis, I recognise all the symptoms”, I was twenty. They told me I had health anxiety, that I had to relax. When I explained that sexual intercourse was painful for me, they told me it was normal. I left that consulting room asking myself: “But if it’s normal, why does everybody like it so much?” Either we live in a Truman Show, or something doesn’t add up to me. When I got my diagnosis, I had around 100.000 followers. I said: “If I can help someone else get a diagnosis, name their pain. then it’s a story worth telling.” I opened Pandora’s box. I discovered that one every seven women suffers from vulvodynia. One every ten suffers from endometriosis. Just in Italy, there are more than 3 million women with a diagnosis and on average there is a seven to ten years diagnostic delay. So I started sharing, sharing my experience, sharing my story, sharing my pain, making people understand what it means to live with a chronic illness, because unfortunately, these are all chronic illnesses. And when I tried to help others, I realised that they were helping me. There was a very important artist who passed away recently, Salvatore Iaconesi, who spoke at a few TEDs by the way, and he created a performance called “the cure” At 39, he was diagnosed with brain cancer and he decided to share his diagnosis and his medical records online to receive help. This makes illness collective and a cure, as he said, is very different from a treatment. And as I told my story and others told me theirs, I realized that, the more I learned to know my pain, the less I wanted to fight it, but simply wanted to embrace it, I wanted to be gentle with myself. This made me understand that our limits are very important and they are important because they are often treated as something negative. You must go beyond your limits, but I think the true magic lies in hugging them, embracing them and, finally, somehow learning to love them. (Applause) Thank you so much. Thank you.
