To See and Be Seen: How Connection, Social Media, and Inclusive Research Shape My Work
I have been thinking about how fundamental the need is for humans to see and be seen, to know and be known, and to feel safe so we can do each of these things confidently. At its best, that is what draws us to social media, the news, and other forms of virtual communication. And in their best form, social and other digital media communication helps us:
See people different than us navigating things we may not have faced yet
Feel seen by others
Know things we would not have had access to otherwise
Feel known
I hope you feel seen and known and that I help you find ways to further experience that connection with yourself, others, and the broader world. There is so much more happening than we can easily consider on a given day.
There is something I care deeply about, and I am eager to share it with you. Many days, I am consumed by my work as a nurse scientist, and I want to give you a glimpse into that work and how I seek to help the community I serve feel seen and known. I would appreciate it if you would help me amplify it. However, first, here is some context.
Internet-based methods of exchanging information and connecting with others have not just made information and connections possible that were previously unimaginable, but they have also transformed the way we communicate. This transformative power of social media can be truly inspiring and give us new hope for the future.
I love social media for the positive impact it has had on my life. For example, during the second year of my PhD, I joined Twitter because I learned that it was a platform where many other PhDs and health policy experts were interacting, and I wanted to learn from them. I was looking for a great way to develop my science communication skills, and I also appreciated the idea of keeping my professional and personal worlds separate. I hoped I could keep sharing pics of my family and fun on Facebook and use Twitter for my "professional work." But on a deeper level, I was seeking connection with others doing similar work because I was feeling lonely in this work and needed to feel connected to others who had gone through a similar journey and could offer empathy and encouragement. Typing hashtags like #PhD and #NurseTwitter, as well as #healthpolicy, and tagging accounts like @AcademicChatter made the vast social media platform Twitter feel much smaller, like a community. And I soon had many more "followers" (read connections) on Twitter than on any other platform, including those platforms I had used for many more years.
And amazingly, the connections I made via Twitter translated into real-world connections and opportunities. I'll never forget the day I was at Duke, and a well-known professor walked up to me with his arms wide open and said, "My Twitter Friend!" That was wild! I suspect he saw my surprise. And that happened many times in other venues, leading to intentional meetups and friendships.
But just as in other areas of life, things change. How and what people interact on social media can change. Remember MySpace or the early days of Facebook? When Twitter became X? Different periods brought about different cultures, topics, challenges, and opportunities. Certain seasons (including the most recent election season) can make our differences more apparent than we knew. Other events (like navigating sickness, grieving a loved one, or navigating something bittersweet like a child graduating) can unite us with different people and make the connections worth it, and feel like a lifeline.
I appreciate how we can adjust our activity level up or down based on our personal needs. Over the last six months, I have been less active on social media and my blog. I have been in an intense season of writing, and because I write so many words in my typical workday, the last thing I want to do when I am off is write more. Other times, I just don't want to share yet. It feels too sacred; I don't want to be distracted and miss those moments, or it's not the right time to share yet. But I love
Having the opportunity to communicate with you and for you to communicate with me.
To see you, to help you feel seen, and to also feel seen by you.
To get to learn about what you are up to and thinking about (e.g., seeing the adorable baby just born, the trip you enjoyed, the parent you are missing, the paper you just published, the grant that was just funded, and celebrating the countless hours it took to accomplish that)
To know what you care about and what you stand for, and to get the opportunity to be known by you in the same way as well.
All of us who use social media are aware that it is not always safe (for example, "keyboard warriors" who post angry messages and seem to enjoy engaging in online arguments). We can not be assured that we will be treated respectfully or kindly. We can only control our own behavior, but when it comes down to it, I have continued to feel that I want to be a part of the conversations on social media and exercise my right to be more present or less, depending on what is helpful for my life and those that I love and support.
I appreciate that this blog provides me with the opportunity to share what I have learned or am grappling with, and to do so through social media. One of the projects I have been working on over the last year is co-leading a Patient-Centered Outcomes Research Institute (PCORI)-funded project called Engaging Adults with Intellectual and Developmental Disabilities (IDD) to Inform a Patient-Centered "Home Time" Measure. One of my favorite aspects of being a researcher is collaborating with community members to discuss and design research that we can conduct together, amplifying their voices and the perspectives of the IDD community to inform why and how this work needs to be done. We refer to this as inclusive research, and it honors the disability community's plea, as captured in their slogan, "Nothing About Us Without Us." So to show you a glimpse into this work. I would like to invite you to the following:
Click here to watch a fantastic video, "Understanding Health Priorities That Matter to the Disability Community," that my team and I produced as part of this project. You will have the opportunity to hear directly from three incredible advocates: Olivia Rose Scott, Janie Desmond, and Betsy MacMichael. I am inspired every time I watch it and reminded of why we are doing this incredibly difficult yet incredibly important work to advance healthcare and other systems that support the IDD community and their families in achieving improved health and well-being. Through this project, we asked the questions Olivia, Janie, and Betsy answered in this video. These findings have informed our research priorities and will continue to guide future studies. We have used the video not only to tell others but also to show them why this work is important in health policy and research.
2. You can also learn more about this project in the public webinar that my team and I at the Duke-Margolis Institute for Health Policy will host on Tuesday June 10, 2025, from 4-5 pm EST. You can register for this webinar, Advancing Health Priorities that Matter to the IDD Community: Learnings and Future Directions, by clicking here. If you are unable to join at that time, still register and you will be notified via email when the recording becomes available. If you are reading this after June 10th, please note that I will post the link to the recording here when it becomes available.
3. Lastly, I would love to hear from you. I want you to feel seen and known. I will always do what I can to ensure you feel safe, whether it's in person, via direct message, a blog post comment, or on any of our social media platforms. I know it can be hard to let ourselves be seen and known, but because it's so worth it, I'll give you a gentle prompt. Here's the question: "If I asked your best friend to describe you, what is one thing they would say?"
As I have time, I'll be sharing more so you can stay informed about what I'm up to and learn more about the work I'm deeply committed to. For me, this includes amplifying awareness of the incredible strengths and resilience of the disability community and ensuring we all get the opportunity to learn from them and eliminate the discrimination they experience. Let's continue to do what we can to #SeeAndBeSeen and #KnowandBeKnown, and work together to make keyboard warrior behavior a thing of the past.
#SeeAndBeSeen #KnowAndBeKnown
