Chronic Pain: help us understand It
Chronic and acute pain is a daily reality for far too many people, often leaving them feeling isolated and unheard. Let us say this clearly: experiencing pain is not normal. It’s not something one should simply resign themselves to live with, but a condition that deserves attention, understanding, and strategies to improve quality of life.
Unfortunately, pain is often underestimated or misunderstood, even by those whose role it is to offer help. It’s frequently dismissed as stress or labeled as “psychological,” while the journey toward a clear diagnosis can be long, frustrating, and fraught with obstacles. For many, this means consulting countless specialists, enduring long waiting times, and clinging to the hope that someone will finally listen and truly understand.
Through this non-profit project, we aim to put an end to this isolation. Our goal is to listen to real-life experiences, learn from those who face these challenges daily, and develop better approaches to support people in pain. No one should feel abandoned when confronting pain. Our mission is to provide support that is more effective, humane, and personalized, starting with what matters most: the experiences of those who live with pain firsthand.
We know this will be a long and difficult journey. Truly understanding pain, building practical solutions, and transforming personal experiences into meaningful change will require effort and persistence. But we are committed to not giving up. Every step forward, every shared story, and every new insight brings us closer to our goal: a future where no one has to face pain alone.
Why Personal Experiences Matter
Pain is deeply personal—an experience that goes beyond medical definitions. Each person feels and lives with pain in their own unique way: for some, it’s an invisible burden affecting every aspect of their life; for others, it’s a daily battle to be heard and understood. It’s precisely this individuality that makes it so important to listen to the stories of those who face pain every day.
We understand that the people who share their time and insights with us are likely not medical professionals—and that’s exactly what we’re looking for. Scientific research on pain is active and constantly evolving, and medical literature already provides a wealth of valuable data. However, what we seek is something that goes beyond statistics and numbers. We want to understand life, the journey, and pain itself from the patient’s perspective.
What does it mean to live with pain? How does it change your outlook on life? And most importantly, if you could go back, what would you change about your interactions with pain specialists? We want to know how you felt when you spoke with doctors, nurses, or during hospital visits. What worked for you, and what left you feeling empty or frustrated?
These personal and deeply meaningful experiences can help us see pain from a fresh perspective. Every story is a vital piece of the puzzle, helping us improve care, humanize treatments, and foster a more genuine dialogue between patients and professionals. We’re not looking for standardized answers—we’re looking for your voice, unique and irreplaceable, to help us imagine a better future for those living with pain every day.
How the Project Works
Our project is built on a simple yet essential principle: listening to those who experience pain firsthand. To gather the most authentic insights, we aim to create a safe and respectful space where anyone willing to share their story, thoughts, and emotions can do so freely.
Participation is easy and doesn’t require any formal commitment. You decide how to share your experience—whether through a written message, video, voice recording, brief interview, or by completing a questionnaire (or any combination of these methods). Every contribution is valuable, and there are no limits or expectations regarding what you share. We want to hear whatever you feel comfortable sharing—whether it’s a reflection on your journey, a particularly meaningful episode, or simply how you live with pain on a daily basis.
We deeply respect your privacy and emotions. That’s why all contributions will be handled with the utmost discretion and can remain anonymous if you prefer. Your voice will become part of a larger effort aimed at improving not just medical support, but also the way patients are listened to and understood.
This is just the beginning of a journey that will take time, but every shared experience is a step closer to a future where no one has to face pain alone.
Are there any rewards for participating?
We understand that sharing your personal experience is a meaningful and profound gesture, and for that, we want to thank you wholeheartedly for your contribution. Your testimony holds immense value—it could be the starting point for improving how pain is heard and addressed.
We want to be transparent: unfortunately, we cannot offer any material compensation for your participation. What we can offer is our unwavering commitment to giving your experiences a voice, so they can contribute to something greater. Your story might help ensure that future patients don’t face the same challenges you have or, conversely, make positive interactions more frequent for others who are on this journey.
Every story is unique and significant, and your contribution could be a powerful tool for inspiring real change. It might help us improve how we approach chronic pain patients, raise awareness among professionals and institutions, and ensure that those living with pain find increasing levels of understanding and support.
How can I participate?
Thank you for taking the time to learn about our project. We believe that change always begins with a small step, and that step could be your story. Every shared experience is a vital piece in building a better future for those living with pain.
If you feel ready to share, we’re here to listen. There are no rules or expectations—whatever you choose to tell us is important to us. Together, we can turn difficult experiences into a guide for the future, helping others to live better lives.
Right after this section, you’ll find important legal information about how we handle your personal data, ensure your privacy, and use the information you provide. Please read it carefully. The following section will outline the various ways you can get in touch with us.
Thank you from the bottom of our hearts for considering this opportunity. We hope to hear your voice and, above all, to make a difference together.
Legal Notice and Privacy
Respecting your privacy is our top priority. Any data or content you choose to share with us will be handled in full compliance with the current Italian regulations on personal data protection (such as the General Data Protection Regulation - GDPR).
Handling of Personal Data
The information you provide will be used exclusively for the purposes of this project and will not be shared with third parties without your explicit consent.
Anonymity
If you prefer, you can share your experience anonymously. Any personal identifiers will be removed or rendered unrecognizable.
Use of Submitted Content
In the participation form we will send you, there will be a dedicated section where you can specify your preferences regarding the use of your content. You can choose to:
- Keep your content completely private, used solely for internal purposes within the project.
- Authorize us to publish or share your content in anonymous form, without any personal identifiers.
- Grant specific authorization for other uses, which will always be agreed upon with you in advance.
Your Rights
You have the right to access, modify, or revoke any content or data you’ve provided at any time, in accordance with your stated preferences.
We are committed to ensuring that your contribution is handled with the utmost care and in full respect of your choices. If you have any doubts or questions about how your data will be handled or how your content may be used, please don’t hesitate to contact us.