One woman’s journey from spinal CSF leak patient to #csfleakwarrior on TikTok
We often talk about raising awareness as an important part of educating laypeople and medical professionals alike about spinal CSF leak. But how, exactly, do you do that? Especially if you are someone profoundly affected by the disorder?
One woman has found her awareness-raising comfort zone on TikTok, the popular social media platform for creating, sharing, and discovering short videos. With almost 10,000 followers and video views in the hundreds of thousands, Connie is one of the most popular “leakfluencers” on the app. Her short videos allow viewers a glimpse of what life looks like with a spinal CSF leak, from dramatic “before and after” videos contrasting her experiences before and after her leak, to videos capturing lighthearted moments with her dog, or participating in the app’s many challenges and trends.
Connie, who is 49, acquired three spinal CSF leaks during surgery. One was repaired intraoperatively, and the second was repaired during exploratory surgery a year later. Unfortunately, she continues to leak from an elusive area and has undergone four surgeries and 14 epidural blood and/or fibrin patches to date.
We recently had a chance to speak with her about her awareness-raising work. Here’s what Connie had to say.
When did you first start your TikTok account?
I started it in 2020. My intention from the beginning was to use the account for spinal CSF leak awareness.
What has been your most popular video?
A video explaining how an accident during surgery has left me bedridden since May 2019. Though I don’t speak in the video, I reference CSF leak in the captions.
Did you expect it to resonate as much as it did?
I certainly did not expect that, but I’m very happy the video has been viewed over 100,000 times, and growing.
Do you have a favorite experience of connecting with viewers or commenters after they’ve seen your TikToks?
I would say every person who watches, likes, comments, or shares any of my leak videos is my favorite. It tells me that I am achieving that which I have set out to do, which is to raise awareness.
How do you come up with your TikTok content?
Most of my videos have been created to answer people’s questions and to simply provide more information about leaks in general.
What’s the most surprising thing you’ve learned from raising awareness this way?
The most surprising thing to me has been reaching everywhere in the world. I have received messages from my own city to small villages in Africa.
Do you have any words of advice for people looking to use social media to raise awareness about issues close to them?
Definitely!
- Be safe. Don’t divulge any information that may jeopardize your security.
- Different social media platforms have different ways to attract and retain followers. For instance, I created different kinds of videos (not leak videos exclusively) in order to gain and retain followers.
- Be simple in the way you explain things and avoid medical terms unless you are able to easily define them.
- Be sure to let people know this is your own experience and not what everyone should expect.
- Lastly, use your own personality and have fun with it!
Thanks for speaking with us, Connie, and thanks to all the work you do raising awareness for spinal CSF leaks!
You can find Connie’s videos at her account @csfleaker on TikTok.