Live Your Life Outside Your Blog
by Molly Schreiber
Hi there. My name is Molly Schreiber and I live in Baltimore, Maryland. I was diagnosed with Type 1 Diabetes when I was 9 years old, in the summer of 1989. As the daughter of a Type 1 Diabetic, I had the “advantage” of being familiar with the disease and the lifestyle changes it involves. I wasn’t so fortunate when I was diagnosed with Rheumatoid Arthritis in January of 2012, at the age of 32. No one in my family had the disease and I didn’t know much about it.
by Molly Schreiber
Hi there. My name is Molly Schreiber and I live in Baltimore, Maryland. I was diagnosed with Type 1 Diabetes when I was 9 years old, in the summer of 1989. As the daughter of a Type 1 Diabetic, I had the “advantage” of being familiar with the disease and the lifestyle changes it involves. I wasn’t so fortunate when I was diagnosed with Rheumatoid Arthritis in January of 2012, at the age of 32. No one in my family had the disease and I didn’t know much about it.
I started my blog in the fall of 2013. At the time I was switching to a new Minimed Insulin pump that had been recently FDA approved. When looking it up online, I found most of the information I was reading, came from bloggers. I started a WordPress site and just shared a brief (very brief when looking back!) description of my new pump. Over the next few months I blogged about diabetes, recipes, knitting, my cat (I’m so exciting) but my blog took a turn on January 17, 2014.
The first time I blogged about Rheumatoid Arthritis was in January of 2014. Since my diagnosis I had been discouraged, sad. I didn’t think it was “fair” that I had been diagnosed with RA after already having Type 1 Diabetes. I didn’t know anyone with RA and I didn’t truly understand the disease, so I never spoke about it with anyone around me. Big mistake. I would get sick from all of my RA meds and since I work in a pediatric hospital, everyone assumes you have something contagious. I started explaining little by little that it was my disease, not a virus, making me sick. People started asking me questions and I realized I felt better after talking about my disease. I started sharing my blog posts on Facebook.
I came to see my blog as a conversation starter rather than a journal. Sharing my disease online easily translates into additional online conversations (Twitter for example) but also many offline conversations. It gives people something concrete to ask you about rather than the dreaded “how are you feeling today?”. It has also given my family an insight into how I’m doing without me feeling like I’m constantly complaining or talking about my disease. My mom often says that she had no idea how much I struggled, until she read my blog, because I do such a good job of looking like everything is fine.
I would encourage you to talk about your disease as much, or more than, you write about it. Go to conferences and summits. Meet other bloggers in person as often as you can. And most importantly, speak up. Answer questions. Try to talk about your disease to people that don’t have it. The more we can educate those around us, the more understood our disease becomes. We then have more people on our team to fight for a cure and to fight for equal access to treatments and medications.
Twitter.com/MollySchreiber
Facebook.com/Atjax
Instagram.com/MollySchreiber
I wish we had these opportunities in the UK, but as Carla pointed out when we met, we're kinda tiny compared to the USA so the opportunities just aren't here ... the bloggers aren't here either, we don't have many and they tend to come and go! I do try to educate people gently but I always worry I'm going to bore them so probably shut up too soon!
ReplyDeleteit was amazing. I feel so honored to be a part of it.
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