As the year comes to a close, and Thanksgiving approaches in the USA, we’re practicing gratitude and reflection. At the center of our gratitude is our dedicated, diverse, and driven Patient Leader Network members. Day in and day out, our patient leaders are the reason we wake up and fight for a more patient-centered system. If you’ve ever had the opportunity to connect with a patient leader, or to participate in a community event, you know just how much passion and purpose patient leaders bring to every campaign, interaction, and relationship. It’s their compassion and support that ultimately changes the patient experience – and that is something to be grateful for!
To celebrate the impact of patient leaders, we asked our Patient Leader Network why they’re most grateful for their health communities. Take a few minutes to pause and reflect on the five times patient leaders made us thankful to be a part of this innovative community.
1. When They Remind Us That There Is Always Someone Who Understands Our Experiences and Struggles
Living with a chronic health condition can be incredibly isolating, and overwhelming. Without a community of support, it can feel like your experiences are unusual and impossible to surmount. Plus, your daily experiences may be invalidated by others who aren’t informed or understanding, and without others to turn to, it can be difficult not to feel defeated by illness.
When asked why she’s most thankful for her patient community, patient leader Kate shares,“Knowing that there’s always someone (multiple someones!) who understands what I’m going through.”
Patient leaders across the world play an essential role in connecting and uplifting entire communities of patients – and most importantly, making others feel less alone.
As patient leader Trishna says: “[I’m thankful] because no matter what I’m going through or how bad a day I’m having, they’re always there for me and they understand.”
2. When They’ve Welcomed Us Into New Friendships and Relationships
When you share such a personal and intimate background, like a chronic health condition, with someone, it quickly deepens your relationship. After all, discussing often gooey, or even “gross” taboo medical stories is surely one way to get to know someone in only a few conversations. Gorey conversation or not, there’s no doubt that the online health community is one of the most supportive, compassionate, and uplifting communities around.
Throughout the year, patient leaders lead widespread campaigns aimed at connecting patients and caregivers from around the world. It’s no wonder we continuously are told “new friendships” are one of the top reasons patients are thankful for online communities. It’s easy to agree with, as patient leader Natalie’s gratitude stems from,“the friends I’ve made” in the community. Here’s to the everlasting friendships that permeate and dot the online health landscape like twinkling beacons of hope.
3. When They’ve Worked With Us To Advance Research and Improve Patient Care
The breadth and diversity of the Patient Leader Network offers endless potential when it comes to improving healthcare for all key stakeholders. With so many experiences, so much passion, and a library of invaluable knowledge, there’s no milestone or obstacle the patient community can not crush into dust. It’s always so inspiring and impactful to see patient leaders teaming up with each other, researchers, or industry to advance progress and transform healthcare. It’s even more incredible to see all of the different forms that these initiatives and projects can take.
For example, patient leader Maria says she’s grateful for the time “The Hispanic Parkinson’s community rallied together to put the first-ever Parkinson’s conference/Conferencia Iberoamericana which brought clinicians, scientists, social workers, and other health allies as well as patients and caregivers from all corners of the world where Spanish speakers reside to not only bring PD awareness but to work together to find better treatments, increase knowledge and work for a cure.”
The impact of these projects can be monumental. Patient leaders act as a catalyst for education, research, and clinical trials. Patient leader Nicole shares “The Cystic Fibrosis Foundation announced that the median life span for a CF patient is now 50 years old.” Beyond the community and psychosocial support patient leaders provide, the research contributions of patients are advancing scientific progress. It goes to show just how powerful the work of patient communities can be!
4. When They Remind Us To Practice Self-Care and Self-Reflection
It’s natural to feel a bit confused, overwhelmed, and even lost when you’re living with a chronic condition. When your health is unpredictable, no day is predictable. Every day is full of change and new challenges for a patient as they cope with symptoms, navigate relationships and attend to everyday duties. Feeling frustrated, sad, scared, or even confused about your sense of self is a normal reaction to the emotional and physical trauma of illness. Despite the supreme skill of patient leaders to support and care for others, it can be a challenge to pause and take care of ourselves. In times of doubt, it helps to turn to the community for guidance and support. Their voices, advice, and stories can help you recenter. Like patient leader Jenny says: “My community helped me learn to love and accept myself, that I no longer had to be ashamed of my illnesses.” Patient leaders have changed the way we approach not only physical health, but also mental and social health, and for that we’re thankful.
5. When They Truly Remind Us That We Are Part of a Community
At the end of the day, the chronic health condition community is at the heart of many patients’ lives. Through their leadership, creativity, and empathy they transform the lives of patients, contribute to research, lead cultural conversations around health, and much more. The simple act of being a part of the patient community is invaluable in itself because it unites patients to one another, and helps us realize that we are not alone and that we are all humans who deal with health. As patient leader Amanda says “The Lupus and Immune Compromised community provides me with support and friendship. They understand what it is like and have insights no one else has. I am grateful for my friends and team of healthcare providers.”
If you’re ever in doubt of your impact, remember that your support means the world to thousands of individuals around the world, and your reach is greater than you think.
Together, you’re helping us transform healthcare, lead innovation, and improve the lives of others If you’re looking to become a part of an impact community, and help support others, or receive support yourself, visit our Patient Leader Directory for a supercharged dose of connection.
A Special Thanks To All of the Patient Leaders Who Contributed To This Resource