My Lupus Secret - now open and available!

I'm excited to share with a you a brand new online resource, created specifically for Lupus patients. It's called The Lupus Secret.

One of my fellow Lupus bloggers, Leslie Rott, from Getting Closer to Myself, recently asked if I would like to be part of the launch of My Lupus Secret, a replica site to My Diabetes Secret. The Secret sites (of which there are several now) are designed to foster openness and honesty by hosting anonymous submissions from patients, so they can make those submissions without judgment or guilt. It's a safe place to share that which you're not ready to share elsewhere. And this one is just for people with lupus.

The sites, which were created and designed by Christopher Snider, who has Diabetes Type 1, have been a wonderful resource for patients around the world. Thus, I was excited to assist in getting My Lupus Secret up and running. I didn't do much, mind you. Chris seems to have the logistics of running these sites down to a science. But I'm happy to serve as a partner, and help when I can.

That said, I took some time deciding how I would become involved with My Lupus Secret. I wanted to ensure that I wasn't endorsing just a "venting" arena, without any positive, solution oriented goal in mind.

But it was clear, by browsing through the other Secret sites, how cathartic it was for people to share in this format. It was also evident that the people submitting no longer had to feel isolated or alone. There was solidarity among those posting and leaving notes - which is essential for us as a lupus community. If we're going to shout about lupus from the rooftops, to others who really don't understand what the disease is, it can only help to create a venue where we talk candidly about the disease. A place where we can describe what the struggles really are, how the disease really affects us, and what we as lupus patients are capable of overcoming, despite our illness. 

Thus, my hope, in introducing you to these sites and serving as a site partner, is that you will be able to share your thoughts in a way that allows you to feel and think more positively about lupus. Maybe it will simply be a burden lifted by sharing something out in the open. Perhaps you'll realize that sharing it once makes it easier to share again, this time with someone who can help you improve the situation at home or at work. Perhaps seeing your thoughts in black and white will make you realize that you shouldn't feel ashamed or guilty at all. Maybe your honesty will help someone else realize they're not alone in thinking "X". And maybe your comments will pave the way for many with the disease to live more productive lives, despite their illness.

So when you get a chance, check out My Lupus Secret. I already tried out the anonymous submission thing, and no doubt about it - it felt really good. It's nothing that I haven't shared here, or said aloud many times before. But it was a valuable reminder that because of lupus, there are struggles for which I create workarounds every single day, just as you do. That means a) we should give ourselves a pat on the back for making life with lupus work, and b) we should never lose sight of the fact that we can still contribute, we can still be successful, we can still make a difference, despite lupus!

Comments

Jennifer Tholen said…
I just wanted to thank you for this and your blog! I was diagnosed 4 years ago and your blog has helped me with every aspect of Lupus. I have learned to start taking care of myself so I can be the best wife and mother my family deserves. I have had some very down moments but I get through it. Thank you for sharing your experience with this disease called Lupus. I know I'm not alone in this fight and someday there will be a cure!!💜💜💜
Sara Gorman said…
You are so kind to share such wonderful feedback. Thanks so much for commenting. It means so much to know my words have helped! Carry on! Take care - SG

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