For over thirty years Monica Sampietro has lived with symptoms that are difficult to explain and even more difficult to recognise. Only recently did she discover that she was suffering from lipedema, a chronic and progressive pathology that mainly affects women and which, despite being very widespread, often remains underdiagnosed. “My journey has been long and complex – he says – and this is precisely why I decided to share it”.
LIVING: all the stories
A choice born from the awareness of how easy it is for many women to get lost among fragmented information and incomplete answers. “When you don’t know what’s happening to you and no one can give you an explanation, the risk is feeling wrong, inadequate.”
A body that didn’t follow the same rules
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The first signs date back to puberty. “During adolescence the body changes, but mine took a different direction compared to my peers and even the women in my family,” she explains. The legs increased in volume disproportionately compared to the rest of the body, the knees were barely visible, covered by pads of fat. “For a long time I thought it was just my conformation.”
Yet something didn’t add up. “I was growing up, but not like the others. It wasn’t yet a question of pain or diagnosis, but of perception: looking at myself and not recognizing myself. In adolescence the need to feel similar to the group is very strong. I, on the other hand, had the feeling that my body wasn’t following the same rules.”
Ignored signals and insufficient responses
Over time, other symptoms also appeared: pain, difficulty moving, fatigue when standing or sitting for long periods of time, poor response to traditional diets. “For years these signals have been underestimated, even by doctors,” he says. The diagnoses stopped at generic definitions such as “lymphedema in obese patients”, “painful cellulite”, “water retention”, with an implicit attribution of responsibility to lifestyle.
Arriving at a diagnosis of lipedema was not easy. “It took more than thirty years. For decades I was told to do lymphatic drainage massages, do more sports, even very restrictive diets, beauty treatments. With very few results and a lot of frustration. The problem was that there was no name. And when there isn’t a name, all that remains is the idea that the problem is you.”
Give the disease a name
The diagnosis came only recently and was, first of all, a relief. “Giving a name to what was afflicting me was liberating. Feeling finally understood took a great weight off me: it wasn’t my fault. It didn’t solve everything, but it profoundly changed the way I look at myself and talk about myself.”
Daily life with lipedema
Before the diagnosis, lipedema had an impact mainly “by subtraction”. “There was silence, pain, often even anger. Many daily activities became tiring and unpredictable, and this also ended up limiting life choices.”
Today the disease is a constant presence, but more aware. “There is the routine of conservative therapy: dry brushing, daily compression, physiotherapy, anti-inflammatory nutrition, training. It is a discipline that requires time and energy and which has also changed social life. It has not eliminated fatigue, but has given it direction.”
It’s not just an aesthetic problem
Lipedema is often reduced to a cosmetic issue. “It happens because there is a great lack of knowledge about chronic female diseases, especially when they are visible,” observes Sampietro. “If it affects a woman’s body, too often it is attributed to personal blame rather than recognized for what it is.”
The psychological consequences are profound. “Not being believed has an enormous cost. It means feeling alone not only in physical pain, but also in emotional pain. Many women live with the feeling of having to continually justify their bodies and their limits.”
Tell yourself so you don’t feel alone
The diagnosis arrived within a psychological journey, and it is there that Monica Sampietro understood the value of sharing. “Telling your experiences is liberating and therapeutic. Giving voice to what you feel restores dignity to a feeling that is often invalidated.”
Today many people write to her to thank her. “But I am grateful to them, because they listen. Listening is the greatest gift a person with lipedema can receive.”
The message she would like to get to other women is clear: “Never compare yourself to others. Everyone has a unique story. I’m not talking about perfection, I’m talking about presence. And about feeling, at least a little, less alone.”
