My body is a symbol

As reported by Valentina Arcovio for Sanità Informazione, it is estimated that every year in Italy around 40,000 new cases of lymphedema are diagnosed. This chronic condition is caused by a malfunction of the lymphatic system and manifests as swelling in one or more parts of the body. Until a few years ago, it was an almost completely unknown disease.

«In daily life, it involves many limitations - says Anna Maisetti, Italy’s first content creator and model with lymphedema and founder of the social community Stile_compresso - You have to wear compression garments, manage therapies, and live with pain and great psychological fatigue.»

At 22 years old (she is now 37), she was diagnosed with an advanced-stage skin tumor; due to the surgical removal of lymph nodes, she now lives with secondary lymphedema in her right leg. «After very difficult years in which I felt misunderstood and without any points of reference, I decided to start Stile_compresso, the Instagram profile where I talk about lymphedema in an ironic but profound way, discussing fashion and body positivity, offering what I couldn’t find myself: representation and support».

What is the perception of lymphedema within the healthcare system?
Unfortunately, lymphedema has been an invisible condition for years. Although it is discussed more nowadays, there is still much to be done: in cases where there is insufficient knowledge, the condition is minimized, ignored, or confused. The lack of information leads to late diagnoses, inadequate treatments, and a deep sense of loneliness.

Did cancer first, and then lymphedema, change your relationship with your body?
Cancer was a watershed moment: it took away the illusion of invulnerability and marked my body with visible and invisible scars. But it was with lymphedema that this relationship became harsher: I felt ruined, different, even rejected by myself. At first, my body was something to hide; then, through a long and complex journey, I learned to accept it again, to listen to it, to dress it with love. Today it is my armor, a symbol: there are still extremely challenging moments, but I have learned to accept them.

With your Instagram profile Stile_compresso, you aim to promote body acceptance also through fashion and to reinterpret the narrative around lymphedema: what medical aids have you turned into tools of personal expression?
Compression stockings, the main treatment for those with lymphedema, are often seen as something "to hide": so I decided to make them a style element. Today, there are colorful, decorated versions, and on my profile I show them paired with different looks. For those living with lymphatic conditions, they are like a second skin, and I believe that aesthetics, beyond functionality, plays a decisive role in helping patients in the acceptance process. Even in my work as a model, the stocking has a symbolic role: the agencies and companies that choose me don’t want me to hide the imperfection but to show it as part of me. Empowerment is not only about accepting the aid, but making it part of oneself and showing it proudly.

On the back cover of your book, you write: "The lymphedema I would develop would be the ruin of my life". What has having lymphedema meant psychologically?
When I was diagnosed, no one really explained what it would actually entail. I felt an overwhelming sense of injustice: after beating cancer, I found myself with a chronic illness that few people understood and many downplayed. I felt betrayed by my body, angry. Acceptance came in small steps, thanks to the connections I made with others through my social profile. That initial pain has now become my strength, but I don’t forget how hard it was to get here.

You were diagnosed with cancer at 22, and now you’re 37: if you could, what would you say to your 22-year-old self?
I know right now you think you can’t make it, that the life you knew is over, but I promise you’ll one day understand that this wound will also be your rebirth. Trust yourself, never be ashamed of your body, seek beauty everywhere, even in pain. You will take back your dreams, but with a value that goes beyond mere aesthetic beauty.