Reflecting on our vision for Dry Eye Stories
Post by Aidan Moore
Those of you who follow our social media accounts may have seen a slight increase in posts about dryeyestories.com last weekend. I had gone ahead and scheduled messages to post automatically on a few Facebook pages/groups--something I'd been meaning to do forever.
We received a comment from a user who no longer wanted to see these kinds of posts, saying there are plenty of stories out there on DryEyeTalk and other Facebook groups. While this is true, I took the opportunity to explain how the Dry Eye Stories project is unique.
Our angle for this project has always been that dry eye is isolating. I know I can't really top the oomph in Rebecca's welcome message, "It's about being seen" on the dryeyestories.com homepage (scroll down to read it). But, if I were to break it down, here's why I think we need Dry Eye Stories.
CURRENT ONLINE RESOURCES
We've already established that we think dry eye can be isolating. Rebecca's original solution to this was the creation of the DryEyeTalk forum, a well-archived and searchable platform for users to share their experiences, troubles, questions, and tips with each other. DryEyeTalk is great. The successive Facebook groups created by the Dry Eye Company and others are also great. The problem is, this information is kept in private groups. Additionally, since the information is so dense and specific, few people who don't have dry eye are motivated to use these platforms. So, by and large, the wealth of experiences we have documented about dry eye remain private.
Rebecca, I might add, has put an incredible amount of effort in making "objective" information about dry eye more accessible than it was 10 years ago. When you have questions about dry eye, our resources are probably one of the best places to end up.
So we have practical information and personal stories. But, who actually reads this material? By my assessment, it's mostly patients. Additionally, motivated eye care providers are involved online, and there are family members who care for relatives with dry eye.
That's a pretty specific audience.
Making yourself heard
Even if you've found your online community, there are other groups of people that intersect with your dry eye experience. Namely, family members, loved ones, coworkers, doctors, and the medical industry. For many people with dry eye, they are the single walking resource on their condition, tasked with educating their peers and asking the right questions of their doctor.
When you suffer from a disease that doesn't always show clinical signs, your personal experience doesn't always get taken seriously. Perhaps you've poured through the online resources, you've finally found an eye doctor that can help, and you've even found a peer-reviewed article that gives some scientific backing to your condition. But, ultimately, how much time can you spend transferring your newfound knowledge to the people around you? How can we begin to address the systemic issues in the pharmaceutical and medical industries while suffering from a disease and managing personal relationships that might be affected or complicated by dry eye?
We have big plans for our little project, Dry Eye Stories. Browsing the ever-expanding collection of photos from our contributors visible at dryeyestories.com/share is SO inspiring. Imagine the impact of having a robust archive of personal dry eye stories to share with the public. Imagine being able to use someone else's story to help explain your condition to someone who's having trouble understanding, or imagine being able to make someone else's life easier by articulating your experiences, low points, and newfound tricks. We accept stories from people at every stage in their dry eye journeys, so, lastly, we hope that Dry Eye Stories can be used as another platform for people to support each other.
We believe the impact of Dry Eye Stories will be greater than the sum of its parts. Your dry eye journey has undoubtedly changed many people's minds and opinions, but now we're asking you to raise your voice in tune with many others to bring more awareness to just how complex, difficult, and misunderstood dry eye really is.
The call to action
Plain and clearly, this is the time for me to ask for your dry eye story. I've been posting quite a bit on social media, but, truthfully, we haven't received as much of a buzz as we'd expected. I hope articulating our intentions with the project will prove convincing, so if you're so moved, please visit dryeyestories.com/share to share your story.
Still not convinced? Keep the following few things in mind:
- You can submit your story completely anonymously. (We'll only collect your email for future one-on-one correspondence).
- Your story can be as long or as short as you want. Short submissions are actually very encouraged!!
- Consider writing your story in multiple posts, or submitting an audio recording of your story (instructions soon to follow).
Visit dryeyestories.com/share to share your story.