A couple of days ago, Christopher Snider wrote a very important post defending My Diabetes Secret (as well as the other “My Chronic Disease Secret” sites he has created). This is my “+1″ to his response.
I don’t read My Diabetes Secret very often, but I am so happy it exists. It’s a safety valve for the diabetes online community and its advocates. We all have secrets or things that we want to get off our chest without changing how others view us. (This is such a part of the human condition that people have made films where secret-keeping and -sharing are central themes.) Within the community, people gain notoriety for their advocacy or their accomplishments, and it can be hard for some of us to feel okay with showing our imperfections, especially when others are looking up to us. I’m not arguing that this is a reasonable burden to put on oneself; sometimes it’s better in the long run to let others see us stumble. However, some people are contractually prohibited for saying some of the things that other people with diabetes would feel free expressing. I’m not one of those people, but I’m also a bit proud from time to time.
For many of us, family members and friends get uncomfortable seeing us struggle occasionally, although it is a regular part of living with any chronic illness. Even though many of us have long periods where we’re more-or-less pleased with our diabetes self-management, there are times when it sucks, and it helps to have a place where we can vent and let go just a little bit. Don’t get me wrong; I don’t partake in the kind of self-loathing that leads me to deny who I am, but sometimes it’s just easier to say things in a safe space.
As for whether it’s advocacy or not, I have to respectfully disagree with both the anonymous detractor and Christopher. To me, My Diabetes Secret is a form of advocacy. Posting there affirms to the patient community that it’s okay to have things to share that make oneself or others feel uncomfortable. It’s okay not to be okay from time to time. I wish it were more accepted by society that being good doesn’t mean being perfect and that sharing our pain and frustration and disappointment doesn’t make what the rest of what we say subject to extra scrutiny. Maybe we’ll get there someday. Until then, having this secret-sharing site makes us better advocates, because it allows us to focus on the message we want others to know about diabetes through our regular social media outlets without the distractions.
Keep up the good work, Christopher!