There are still pathologies aggravated by taboos today. Living them on her own skin, the model and influencer Giorgia Soleri he knows what it means, so much so that he has given himself a very precise mission: “To ensure that in ten years the next sixteen year old Giorgia with vulvodynia, pudendal neuropathy or endometriosis can immediately have a diagnosis, a treatment paid for by the System National Healthcare and universal recognition of his chronic pathology “.
The die for the diagnosis
Guest of the Salute Festival, interviewed by Benedetta Perilli, Soleri recounted the process she had to undergo to arrive at a diagnosis and the social vortex triggered by her choice of advocacy. “It is not easy to be so exposed. You are judged for what you feel and for what you do. There are those who do not believe you and throw you back into the vortex of insecurity that you live in the long journey in search of a diagnosis, when it is also the people who know you who question your pain, who give you the exaggeration. But then come the testimonies of those who have managed to obtain a diagnosis and give a name to their disease by reading what I write, who I am thanks because she feels less alone in this unequal battle “. And all the bad just slips away.
Fibromyalgia, the invisible disease (for others)
by Giorgia Soleri
The social networks and the meeting with the others
Thanks to social media, the 26-year-old has “met many” sorrow sisters. “People who love you are close to you and support you, but logically they cannot fully understand what you feel because they have not lived it on their skin. Being able to talk and compare with those who have the same pathologies as me is a fundamental help. It is therapeutic: sharing is the opposite of loneliness, and breaking the silence is the most revolutionary tool we have “.
fibromyalgia
Even more in the last few weeks, since he received “his fifth diagnosis. I have fibromyalgia, a Central Sensitivity Syndrome or even central sensitization, which is probably the root cause of the other diseases I have struggled with since I was 16. I have it. It took eight years to get the first diagnosis, and it was both a liberation and a punch in the stomach. It’s hard to explain, but being able to name a chronic disease makes you less afraid of it because you know who the enemy is against. you have to fight. But when I did a Google search on vulvodynia there were yes and no five results in Italian. “
There is no recognition of the health service
Today, thanks also to her, there are 358,000 links, not counting the posts on social media. But still “there was no recognition by the National Health System as a chronic disabling disease. To make this change, and that article 32 of our Constitution, which protects health as a fundamental right of the individual, is actually applied. , we founded the Vulvodynia and Pudendal Neuropathy Committee. Healthcare professionals, associations and activist patients are fighting together for the right to health that belongs to us and which is currently not recognized. In April 2021 it was filed with the Chamber of Deputies a bill to recognize vulvodynia as a disabling disease. But since the government fell, now everything needs to be redone “.
Today I feel less alone
“It was too great a pain to fit all in my body, I needed to transform it to make it useful for me too – confesses the influencer, editor of the” (In) visible “column on Health. Today I feel less alone because I have a whole community of people who feel the same pain as me and understand how disabling these pathologies are. I already know that in two hours I will pay for wearing these tight pants because vulvodynia can also be caused by contact. I know what it means to live with pain but at the same time wanting to do normal things that can expose you even more to the judgment of those who do not believe you or accuse you of inventing your symptoms. to listen to oneself and break the wall. Shame on the symptoms that affect the sexual and genital sphere. Every pain deserves listening: it is not normal to have to suffer in silence “.