DPAC Champion

I was recently asked to contribute to an update that DPAC (“Diabetes Patient Advocacy Coalition”) sends out to showcase what their Champions have been up to.  I was honored to be included in their update and wanted to share the story with you that they sent out this month.

DPAC CHAMPION MONTHLY HIGHLIGHT 

Shannon Marengo

When I was diagnosed with Type 1 diabetes in 1992, as a senior in high school, I did not know anybody else with diabetes. No friends had it, and I only had distant older relatives with Type 2 who lived in another state.  The only reference I had was in my Orthodontist’s office I remembered one day a young patient was selling candy and a staff member told her, “Oh, I have diabetes. I’m not allowed to have sugar.” So that was one of the first things that I thought of when I was diagnosed. Clearly I soon learned that is not true, but at the time that was my only reference.  And I spent 20 years not knowing anyone with diabetes, with the exception of a person here and there that my mom would introduce me to. All of whom were adults – so I didn’t know any other young adults that understood what I was going through 24/7 every single day.

Then one day 9+ years ago a friend whose daughter was recently diagnosed with T1 told me she had found some blogs on diabetes and suggested I check them out. I did, and I realized I had found “my people”. I started almost obsessively reading blogs. Then I realized I could do that, too. I could be that voice of someone who “gets it” and might have something to say that someone else needs to hear. So I posted my first blog post. And people actually started to read it! Not just family members and friends. ☺  It became almost therapeutic for me. Even in the posts where I didn’t have anything “big” to talk about – some days it was just talking about insurance issues, or about how my crazy blood sugars that day.    

I have known for a very long time that I want something good to come out of me having this disease. I don’t want to just survive with it, I want to help others any way that I can. When I was diagnosed, a doctor told my 17-year old self that I should never have children because “Diabetics shouldn’t have babies.” And I have gone on to have 2 successful and healthy pregnancies, the most recent of which was with twins. So I love when I can be an encouragement to girls who want to have a family one day, or even to moms who worry about their T1 daughters having a family in the future.   I also have recently found a passion for advocacy and last fall was invited to attend a DPAC event in DC to speak on Capitol Hill about diabetes. It was an incredibly impactful weekend for me and I came home wanting to do even more, even though I didn’t know how yet to channel this newfound excitement. So I decided to stop saying I wanted to do more and actually start doing more.  Since the DC trip, I have spoken on advocacy in a breakout session at our local JDRF chapter’s TypeOne Now Summit.  And I have relaunched my blog and increased my social media presence, committing to posting more frequently. I am also working closely with NDVLC (“National Diabetes Volunteer Leadership Council”) which has become incredibly rewarding – I have connected them with my employer, which could potentially impact thousands of others employers and to know that I can possibly play a small part in helping others be able to afford their insulin and/or diabetic supplies by simply making an introduction, that is an incredible feeling.

If you’re considering starting a blog and you are thinking “I don’t have anything important to say” – you could not be more wrong. You DO have something to say. And your story is just as important as the next person. And if nothing else, you could be like me and it could become therapeutic for you to actually write down what you are thinking/going through.   I write in a journal every day and I write 10 goals. 2 of my goals for the past 6 months have been 1) Become a leader in diabetes advocacy and 2) my blog will go viral and I’ll be able to help others living with diabetes. I have a great feeling about 2020!