Two years ago I created an online space for people to anonymously share their thoughts, fears, and experiences about their life with diabetes. Since then I’ve expanded this idea to other patient communities including mental health, cystic fibrosis, chronic pain, arthritis, and lupus. Today that expansion continues with the debut of My Multiple Sclerosis Secret.
When I look at the conversation around MS online, the majority of tweets, status updates, and gifs revolve around the struggle to validate the experiences of an invisible illness. Because there are not many external manifestations of your disease, a lot of time and energy goes into defending basic truths about your health and wellbeing. My hope is that My Multiple Sclerosis Secret can become a space to help explain the realities of multiple sclerosis. My goal is to build a safe place for sharing within the multiple sclerosis community while simultaneously providing an opportunity for others to learn from people impacted by MS.
My Multiple Sclerosis Secret is safe place to share your multiple sclerosis secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.
In order to get this right, I know I will need help. So I’ve partnered with some of the fiercest multiple sclerosis advocates I know, Jamia Crockett (diagnosed at 26), Eva Helmersson (diagnosed at 32 after experiencing attacks for 7 years), and Leslie Bowen (diagnosed at 30). Their knowledge and personal experiences will help ensure this site treats the MS community with the respect it deserves.
If you would like to share your secret, you can use this submission form.
Along with the secrets that are shared, this page contains a list of community and non-profit resources that may help. If you feel this list is incomplete, please let me know at mymssecret at gmail dot com.
I’ve seen what the power of “me too” has done for the other communities I’ve reached out to with the My Disease Secret Platform. Diabetes, chronic pain,cystic fibrosis, mental health, arthritis, lupus, IBD…we all have a story to tell. I believe My Multiple Sclerosis Secret can help share the realities of life with this incurable disease and hopefully help remind you all that you are not alone in any of this.
I hope this works.
Type 1 diabetes, diagnosed 2002