TOto defeat stereotypes to help those who feel uncomfortable to show themselves as they really are: we asked for the ad Alessia Zurlo to talk about her life as a model with lymphedema. Here is his story
How hard is it feel empathy and validate the pain of a person who has an invisible illness or disability? We are used to believing only what we see and often the tendency is his underestimating and not recognizing pain of those who have this type of disease.
Alessia Zurlo is one of the first Italian models with lymphedema and can be found on Instagram under the name Smart girl. With her we discovered her personal and medical history, but above all we went deep to understand why it is so important to raise awareness about these issues and be open to sharing
How was the Smart Girl Instagram profile born? Can it be considered a result of working on yourself?
Yes, when I decided to open the page it was a turning point. I decided to muster up the courage and tell myself. Since I was a child I had this rare and chronic disease of the lymphatic system, called primary lymphedema, which made me ashamed of one of my two legs, in which the lymph no longer circulated and stagnated, creating a swelling, swelling. No one at the time was able to give me a proper diagnosis so it took some time before I realized what I had in my leg. Then came the diagnosis and I began to think that the lymphedema in my leg was a monster to fight. When I was a little girl in the late 80s, early 90s, there was no internet, no social media, and it was exhausting trying to network.
I spent years hiding this imperfection of mine because I felt different from others and inadequate
How has using social media helped you?
Opening the Instagram profile to talk about it was an occasion for redemption. It gave me the opportunity to meet other people who are experiencing the same situation as me, while for many years I lived in solitude and without being able to share what made me suffer. Social communication reaches everyone and is also democratic because it can really be accessible to anyone. In this sense, it can represent an excellent means of comfort and comparison, if used positively.
What differences do you notice, in relation to the past, from a medical point of view, in the treatment and recognition of lymphedema? Has anything changed for the younger generations?
There have been some advances in scientific research, but I believe there is still a lack of adequate education about lymphatic pathologies. In addition, there is great heterogeneity in Italy in terms of access to care. There are areas that offer more resources and others less.
Acknowledging my disability and my disability has been an arduous and uphill journey. For years I carefully masked what I thought was a problem, investing a lot of energy in other aspects of life and studying.
When a disability isn’t obvious, people often think it doesn’t exist and don’t understand your pain
They tell you that since you look good, are a smiling person, and do a good job, then you shouldn’t feel so bad, and they end up thinking you’re a liar. Thus devaluing what you feel and experience. In addition to the lymphedema, I was struck by another chronic autoimmune disease after pregnancy, which destroys the joints and causes a lot of pain. So my health deteriorated and the feeling of injustice and inadequacy that accompanied me since I was a little girl increased.
Why did you feel unfair? And how did you manage to turn it into something useful?
For many years I felt angry with my leg, which I thought was wrong and I wanted to be “normal” and have two identical legs. I felt anger, but also shame. Then came the second disease, rheumatoid arthritis and I didn’t understand why life wanted to give me this burden too, I thought I had paid my bill with lymphedema.
I felt angry with life and asked myself, “Why me?” “What is wrong with me?”
Then, reworking that suffering and opening myself up to that of others, sharing my story and listening to other people’s, I realized that everyone fights their own battles. I realized how many difficulties there can be in life, besides my own.
While comparing myself to other people, despite my deep pain, I began to wonder if I could handle what others were feeling. This allowed me to reduce my pain and start to wonder what I could do about it, instead of continuing to be a victim of it.
Sharing for me was a powerful tool of acceptance, today I can do something with this pain of mine, putting it at the service of others
I hope it can be helpful and inspiring, as well as instill some courage in those who have experienced what I have experienced.
What does diversity represent to you today?
If before I felt inadequate compared to the standards proposed by society, today I understood that it represents a wealth and an opportunity and allowed me to get in touch with many people and know their stories, to be fascinated by the courage they showed. in facing their difficulties and in turn being encouraging to them.
If I had stayed closed in my world without exposing myself and without finding the courage to tell my story, I would have missed a point of view different from my own. The moment I was able to accept my illness, I began to heal
Would you like to tell us about your collaboration with the Imperfetta Project?
When I was a child I had two dreams, one was to become a doctor and the other was to frequent the world of fashion. As for the first dream, I did not become a doctor, but a patient and experienced medicine from a different perspective. However, as far as modeling goes, I’m working on it. Thanks to the Imperfetta Project I reconnected with the world of fashion, from which I had distanced myself precisely because of my leg, becoming today the first Italian model with lymphoedema. I bravely pose in front of the photographers’ lenses, telling myself and making this rare pathology known so that those who suffer from it will no longer feel alone like I did.
With the maturity I have reached, more than a model, I would like to be a model of inspiration
In fact, the agency I belong to names its own models muses For this reason. I hope that I can inspire other people who don’t feel represented because of a stereotype of perfect and unattainable beauty that we grew up with. In reality, beauty lies within each of us and each is valuable in its own uniqueness.
Imperfetta’s project focuses on the truth and authenticity of the beauty that each one of us has
Speaking of turning pain into a useful resource, for ourselves and others, are there other realities that you support?
I am actively involved in a non-profit association of people affected by primary lymphedema, called Lymphido. The association was born from a group of parents of children suffering from lymphedema, motivated by the need to share what they were experiencing and create value. Now the reality has grown and in addition to children we have also welcomed adults with different types of lymphedema, such as secondary.
I decided to get involved with this club because I am a specialist patient and can put my long experience at the service of younger people and their parents, who need to know how to manage lymphedema in everyday life. There’s the medical aspect, but then there’s the whole practical life aspect that a doctor can’t teach you.
What does living with lymphedema mean in everyday life?
It means waking up every morning, removing a bandage you’ve kept on all night, and putting on an elastic sock. In my case it takes from the legs to the back. They are made-to-order support socks, among other things they are also very expensive and not all areas in Italy let you have them for free. I also show boys and girls how I commit and take care of myself.
Helping boys and girls who have this rare disease is a little like helping me and my parents many years ago
Each lymphedema is a specific case and has its own peculiarities, but in general there are some limits that this disease imposes on you for practical reasons, such as the fatigue to live, the attention you have to pay to cuts, infections, wounds and the fact that you cannot sunbathe directly on your skin. And then the daily care, with specific treatments, restraints and compression bandages.