Two years ago I created a site designed to host anonymous secrets from the diabetes community. The goal was to provide a safe place for people to share what they were feeling and experiencing without fear of stigma, shame, or judgement. But battling stigma and judgement is not unique to the diabetes experience, and that is why my expansion of the My Disease Secret platform brings us here with the beginning of My Lupus Secret.
I recognize that lupus is a big deal. I recognize that there can be struggles to legitimize your pain, your emotions, and the medication it takes to live a “normal” life – for however you define normal. I recognize that the recent revelations about Selena Gomez mean there’s an opportunity for acceptance and advocacy on a greater level while her story remains fresh in the public eye. But beyond that, I recognize that there’s a chance for the lupus community to help dispel some myths and misperceptions about what you all are going through with your words and actions each day. My hope is that this site can help with that effort.
So here is My Lupus Secret. A safe place to share your lupus secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.
Because my knowledge of lupus is limited, I’m partnering with Leslie Rott, Sara Gorman, and Tiffany Peterson to ensure we get this right. I will be relying on their own personal experiences and their broader understanding of the lupus community to make sure this site treats the lupus community with the respect and dignity you all deserve. They will be my allies in this endeavor.
I understand that there may be overlap between some of the existing My Disease Secret sites and what My Lupus Secret hopes to accomplish. I’m not hiding any of my intentions, so I’ll lay everything out briefly here:
Based on my own impressions and the insight from advocates within each of these communities, the sites I have created, and will create are unique enough to justify their existence and active enough to merit their own site. This isn’t a competition to see which community is most active, but I have to manage my own resources to best serve each community appropriately. This is my plan right now. If you have any questions or concerns about how I am running all of this, I welcome your feedback: mylupussecret at gmail dot com.
If you feel like sharing a secret about how lupus impacts your life, be it your own diagnosis or that of a loved one, this submission form is for you.
With the help of Leslie, Sara, and Tiffany, we’ve started curating a list of resources specific for the lupus community. By no means is it absolute, but it’s a start. If you have any suggestions to make to the resources page, please let me know: mylupussecret at gmail dot com.
At the end of the day, I believe in the power of “me too”. Seeing the responsesMy Diabetes Secret, My Chronic Pain Secret, and My Mental Health Secrethave received tell me I’m on the right track. As each secret is shared, the likes and reblogs remind each of us that we aren’t alone in these struggles, emotions, and experiences. My hope is that My Lupus Secret finds a similar home within the broader lupus community.
I hope this works.