My diabetes-related Facebook account has been deactivated for awhile now. It all started with Facebook asking me for government-issued ID to ensure that Ally VeryLight NoSugar was my legal name.
Well, no surprise here: It’s not.
But does that make the name any less meaningful?
After multiple back-and-forth emails explaining myself and my name to Facebook, they bureaucratically decided that my personal account should become a fan page. Too bad I already had a fan page here, and now my personal account was exiled by Facebook.
When I established my blog and its related Facebook account, I was slowly and painfully succumbing to a lackluster amount of insulin being delivered into my body due to defective insulin pump products. (All is well now thanks to some creative problem-solving.)
I went online to search for technical answers, and I ended up finding so much more than I ever could have imagined: peer support, courage to return to multiple daily injections and to feel better, a purpose in advocacy. But when I created Very Light, No Sugar, I had legitimate concerns about employment discrimination due to my health status. I feared that no current or future employers would want a woman with a defective insulin pump representing their offices.
So, I wrote under my nickname, Ally, and did not think much of it until the Facebook fiasco. Allison was sidelined to the couch, fighting ketones and trying to solve biomedical infusion set engineering defects on her own. Ally was the empowered diabetes advocate, enjoying the companionship of a newfound online community and writing for a greater cause. Although I am both of these entities in one authentic being, at the time I preferred the life Ally was living, the act of using my own suffering to invoke goodness somehow.
My issue with Facebook is the discriminatory nature of its names policy. I am not the first ePatient advocate, and I imagine I will not be the last, to be singled out by Facebook. While Facebook has every right to enforce a strict names policy, the problem is that they do not do so universally. My friend can have an account for his Chihuahua, Scruffy the Dog, yet ePatients advancing charitable causes are somehow pinpointed as “sketchy” by Facebook. Far from it; ePatients are some of the bravest and most selfless people on earth.
Safety is also an issue on Facebook. When my friend uprooted her life to escape domestic violence, she wanted to keep in touch with loved ones without her abuser knowing her whereabouts. Logically, she used a Facebook pseudonym to maintain communication with us from afar.
Additionally of note, I was uncomfortable uploading my government identification material to Facebook’s site for verification. My personal information was compromised in an HR data breach at my office last year, and those feelings of violation and “what ifs” are still raw today. I did not feel the need to further justify my name to Facebook, so I chose to take a break from it.
No matter the reason, if Facebook truly cares about community as they claim, these circumstances should be incorporated into their names policy in a supportive, understanding manner.
Although my blog does not make the world go ’round, I do believe that a good name helps a good cause. Just as I remembered the website sixuntilme.com for its creative brand and background long before I became a blogger myself, my hope was that Very Light, No Sugar would stick in the minds of a few people who needed to hear my story. If the name allowed me to give back to the diabetes world in my own small way, then it carried a reputation I could be proud of.
Despite all of this, the break from Facebook has mostly been refreshing. Although I want to keep up with the diabetes community, my Facebook newsfeed had been overwhelmed with scary diabetes stories, quarrels despite all of us being in this fight together, and surely my own “endearing” moments of annoyingness. Frankly, I needed to detox from triggers contributing to diabetes burnout.
I missed little things like easily messaging my friends to catch up, specific advocacy groups, or discovering links to new, enjoyable blog posts. And, hey- it’s Facebook. Like it or not, (almost) everybody’s using it.
Out of principle, I am back under a slightly different ePatient pseudonym. I believe that ePatients should be given the due respect that others receive. This is my symbolic way of standing up to a social media behemoth.
My name is Allison. I also go by my nickname, Ally. I have type 1 diabetes. I like coffee. A lot.
Call me whatever you want (within reason), but I will never stop fighting for a diabetes cure.
What more could Facebook need to know, anyway?