I’ve seen what My Diabetes Secret has done for the diabetes community. Every time a new secret is published, a resounding “me too” in likes and reblogs follow. Bringing these internal, emotional struggles to the surface has shed a new light on what it’s really like to live with diabetes. Managing that disease is more than just checking your blood sugar and taking your medication, and more and more people are starting to recognize the larger psychosocial challenges that come with living with a chronic disease.
With that in mind, I sought to expand the concept of My Diabetes Secret to other chronic disease communities. First among them is the chronic pain community and mypainsecret.com.
I’ve spoken with many patient advocates that have faced skepticism and disbelief when they say things like “my 2 is your 12” when describing their pain. I’ve spoken with peers that struggle for acceptance and empathy among family and friends – to the point that the prospect of informing the general public feels like an impossible task.
I can’t guarantee an anonymous site designed to share secrets about your life with chronic pain will make a difference to the world, but it may make a difference to you, or to someone who reads it. So many times I’ve heard advocates battling chronic pain describe the challenges they face in getting people to understand that their pain is legitimate, getting family and friends to believe their pain is real.
I want this site to serve as an opportunity for you to share what it’s really like. I want this site to start a larger conversation about what it means to live with chronic pain and what it means to go up against the physical and mental hurdles that encompass that pain every day. If you’d like to share your chronic pain secret, you can use this submission form. All published entries are anonymous, and there will never be a way for anyone to associate specific person with their submission.
Because there’s often a coconspirator to chronic pain in the form of arthritis, Crohn’s, fibromyalgia or some other condition, we’ve done our best to include a range of tags to include with your submissions. The list isn’t perfect, and we welcome your feedback at mypainsecret at gmail dot com.
Additionally, I’ve built out a list of resources, some for people living with chronic conditions, and some specifically for the chronic pain community. If I’ve left something out, please let me know by sending a message to mypainsecret at gmail dot com.
Finally, I want all of you to know who I am. My name is Chris. I was diagnosed with type 1 diabetes in 2002. I am not battling chronic pain. Because my empathy can only go so far, I’ve enlisted the help of Emily and her experiences with Still’s Disease, Trigeminal Neuralgia, and a yet-to-be-named rare disease to serve as an ambassador to the chronic pain community. I will rely on Emily to ensure any changes I make best serve your community.
I hope this works.