A journey into fibromyalgia

The story of Susinandfriends (which contains that of many other people)

How much do we know and understand fibromyalgia? Personally, I knew very little about it, not so much for its symptoms, which can be known by doing a rapid search on Google, but as far as subtlely and invisibly it sneaks into the life of those who suffer from it.

Thus, I find myself one day on Instagram to type the word fibromyalgia, and I find myself in front of an account having as the profile image of a nice smiling plum. Behind the purine purine (@susinandfriends) Susanna is hidden, a 28 -year -old girl who decided to speak without filters of her illness (and not only) and to become an activist by joining the  Vulvodinia and neuropathy committee of the pudding. A pleasant dialogue that has opened my eyes on a world that we should all explore.

When did you start having the first symptoms related to fibromyalgia?

I started having the first symptoms of what I now be called fibromyalgia at about 19 years. Headache increasingly frequent, gastric disorders, eating intolerances, a strange tiredness from awakening, a pain without explanations on the shoulder, then in the neck, then increasingly widespread. I reached diagnosis at 26, after two years of disabling disorders and pains now widespread throughout the body.

Did you think it was fibromyalgia even before the official diagnosis?

I didn't even know the existence of this disease. I heard about it for the first time in the middle of a weekend based on Netflix and Pisolini on the sofa, when my finger pressed play on the documentary "Gaga: Five Foot Two" which follows the Superstar Lady Gaga while launches his own New album and prepares for the performance during the Super Bowl. The artist's human aspect is represented in an extraordinary way, letting also glimpse the weaknesses and difficulties due to the disease that has been afflicting it for years. We are obviously talking about fibromyalgia.

It was enough 10 minutes or a little more to realize that that thing I was seeing on the screen was also "my thing". At that point I decided to trust my instinct and go to a rheumatologist (indeed actually for a couple). This is the case I found myself with the diagnosis of black -written fibromyalgical syndrome on white.

What are, according to your experience and that of others, the symptoms that should not be underestimated?

The fundamental principle, which does not only apply to fibromyalgia is that pain must always be listened to and investigated. Unfortunately, the invalidation of pain, especially of the people assigned female at birth, is a systemic problem still sadly current.

Susina, what impact has fibromyalgia on your life and relationships had?

At the level of relationships I have not had particular difficulties. Certainly in this he helped my predisposition to tell me, open myself and confront myself with other people. It is not always easy and it is not for everyone: not being understood, not finding support and empathy in other people can lead to closing in themselves, increasing the sense of solitude and exclusion from the social life considered "standard", based on mythization of the human body as a perfect machine assessed in its productivity.

I also collided with this sense of inadequacy compared to what the company expected from me and to the path that I myself had chosen for my future. I had to question my lifestyle and adapt it to my new needs, find a new balance and change the work path I had taken.

Has the disease also involved problems from the point of view of the menstrual cycle?

The pain for those suffering from fibromyalgia is not constant, oscillates over time based on external conditions (for example, changes of seasons) but also to the conditions and activities of the single person. For this reason, the trend of the menstrual cycle also influences the pain which, in the days of menstruation, becomes really difficult to tolerate.

How was the Susina and Friends project born?

When I received the diagnosis I started doing research on the web and I realized that the narrative of fibromyalgia was often victimistic and referring to a target of people over 40.  So I decided to tell the disease from the point of view of a 25 year old girl with a great desire to joke, laugh and have fun with friends. The story of the disease is useful to make it known to as many people as possible but it was also a therapeutic act for myself, as well as giving me the opportunity to deal with many people in the same condition and find myself in a wonderful mutual and selfless support network .

How did the meeting with Vulvodinia and the Penando neuropathy committee occur?

In October 2021, with not one less, we brought the testimonies of Tant3 to the Italian squares who, like me, suffer from invisible diseases, that is, not recognized by the Italian SSN. These are fibromyalgia, endometriosis, adenomyosis, vulvodynia and neuropathy of the pudding. On this occasion I met some of the people who now, together with me, are part of the Vulvodinia and Neuropathy Committee of the Pudando, an association that is fighting for the recognition of these two diseases. I immediately found myself in their determination and desire to do something concrete to change things and I decided to take this path of activism with them.

Susina, do you think there is still very prejudice towards this disease?

Unfortunately, the prejudice on this disease is still very present, even in the same medical class. Pain is an extremely complex research field, whose dynamics are largely unknown. Female pain is normalized, as if women were destined to suffer and bear: this is also a form of gender discrimination.

How we could do good for the good of activism so that  Is fibromyalgia recognized as an invalidating disease?

We must make the effort to eliminate the inhabitant lens, the belief that all people are healthy and consider all the people who are not "exception". We must learn to take on as the only possible attitude in response to the pain of others that of the "I believe you". We must use our voice to spread the messages of the struggle of others, support mutual battles: The rights do not divide, they are not slices of a cake, the rights are created and there are for everyone.

Antonella Patalano