“It is deeply disturbing that creating new ways to be anonymous or show how ashamed being sick makes you feel is something you’re growing. This is not advocacy. This is making self hatred an expectation of being sick.” (Submitted to My Disease Secret)
I created My Diabetes Secret because I saw an opportunity. I saw a chance for people to share how they really feel without needing to tie their words to their identity. Like screaming at the ocean, sometimes it’s simply enough to get something off your chest and move on. I didn’t see this form of sharing as hiding behind the anonymous logo that heads these sites, but as a collection of individual moments of realization, of self actualization, of owning their lives for better and worse. The likes and reblogs each submission receives are not a digital statement suggesting the pain and struggle shared is a good thing or one to be expected, but respecting and appreciating the act of sharing itself.
I’ve never claimed to be an expert in all of this. I think Tumblr is a pretty neat platform, and I believe the Internet has a tremendous role to play in the well-being of each and every person impacted by a chronic disease or illness. I feel that promising anonymity to anyone who chooses to share whatever they are feeling not only builds trust among all who visit this site, but it ensures the utmost sincerity with each and every character, word, sentence, and submission. In asking people to open up their hearts, minds, and souls, I’ve been greeted by hundreds of examples of the raw emotion associated with diabetes, or cystic fibrosis, or arthritis, or depression.
But you’re right, anonymous. This is not advocacy. This is merely a small component of what patient advocacy needs. Beyond the fundraising and the facts and the politicians, the voice of the patient is paramount to what all of us hope to accomplish be it passively or actively. The voice of the patient comes in many forms. Written testimony and perspective via email to a local state representative, participating in local fundraisers, literally calling upon Congress to increase funding for crucial research, changing your profile picture to sync with an awareness campaign. All of those examples have their place in the broader advocacy effort we all engage in. Just because someone’s identity is hidden, and their name is Anonymous does not mean their input is any less meaningful. The sum of these sites may not equate to any form of advocacy you are partial to, but each one of these secrets adds to the broader narrative that we are not doing enough.
I do, however, disagree on your last assertion. These sites do not promote self hatred, or indicate that self hatred is an expectation of being sick. These sites remind anyone and everyone who visit that it’s okay to not be okay. These sites remind anyone and everyone who visit that you are not alone.
I appreciate your concern, anonymous. And I value your feedback. If you want to get in contact with me to make sure we are all doing right by the broader patient community, you can find me at firstname.lastname@example.org. I welcome a continued dialog on how we might improve the experience on these sites and take what is shared to make lives of all patients and patient communities better.
This is not advocacy. This is connecting the dots between what we know, what we think we know, and what we feel. This is learning from people with life experiences wildly different from our own and coming to the realization that we’re all in this together. This is compassion and honesty. This is empathy in its purest form.
(Published alongside said criticism on My Disease Secret)