This post is probably the most difficult to write and I think the most important – finding the right words to describe something as elaborate and essential as diabetes advocacy can be challenging.
First off, being among some of my diabetes family on the 9th anniversary of my father’s passing (due to diabetes complications) was surreal. Here I was, in a room full of 30+ others whose lives are touched by diabetes and representatives of a company whose aim is to make those lives easier. A connection that I didn’t know existed just 9 years ago. Something that was totally unimaginable during his time I’m sure. I couldn’t help but reflect on how things could have turned out differently for him had support like this existed.
Rob and Todd presented to us the Welcome to Type 1 video. If you have not yet seen this video, watch it. It so precisely portrays how attitude has everything to do with how to best cope with living with something like diabetes. It also illustrates how diabetes, unlike other chronic health conditions, leaves most of the care to the patients and not the healthcare providers. For this very reason, it becomes crucial for the patients themselves to advocate for the rights and well being of people living with diabetes. What is advocacy? By definition, health advocacy supports and promotes patient’s health care rights as well as enhances community health and policy initiatives that focus on the availability, safety and quality of care. I don’t see myself as an innovator in the diabetes community. I do not come up with the exceptional ideas that others do or write remarkable books. But I do love to help collaborate on initiatives, provide my extra supplies to those who need it more than me, spread the word of current or future events, connect people, fundraise and donate to diabetes organizations, help introduce new products, share my own story and of course retweet 😉 By doing these things I can achieve forms of advocacy.
Hearing Josh say that “everyone has a bomb in their life that goes off at some point” and “it’s therapeutic to give back” couldn’t have been said better. For most of us, the bombs are the daily struggles of diabetes. For a lot of us, we consider social media a form of therapy. He thanked us for what we do. For providing advice on the little daily things of living with diabetes to people who have questions. For letting others know that normal may not be what you think. For showing that living with diabetes is hard but moving forward is important. When I get emails or comments from readers thanking me for a particular post or telling me that my father would be proud of me for my actions, it touches my heart with a sense of accomplishment. I reached someone and hopefully made a difference to them.
Yes, Roche initiated a gathering of diabetes online community members to discuss how to fill the gap between patient needs and their own company’s contributions. Did they do it lavishly? Sure. Were all the extras completely necessary? Of course not. But regardless of how lavish the locations are, these opportunities are invaluable to help us communicate what is important as a strong group. However, even without these summits, we are still needed to tell the public just what diabetes is all about. To bust the myths that are endless. To fight for more affordable supplies. To let people all over the world know that they are not alone and you can do this. We are the experts.
Reblogged this on The Daily Advocate By Painspeaks and commented:
“This post is probably the most difficult to write and I think the most important – finding the right words to describe something as elaborate and essential as diabetes advocacy can be challenging.’
Check out this awesome post on Diabetes Advocacy and Awareness!
I somehow missed (or maybe you didn’t say) that Roche happened at the same time as the anniversary of your father’s death. I’m sorry I didn’t know. I’d have given you an extra hug that day.
I think that advocacy takes on many forms and I’m glad that you’re around. 🙂 You and your RT’s always make me smile. ❤
Well said and so true. I think you were at the absolute perfect place to experience that rough anniversary. It is so amazing how far support has come in just a few short years. I’m happy you were able to go and have such a great experience!
“I couldn’t help but reflect on how things could have turned out differently for him had support like this existed.”
And this is why we can never stop advocating for the issues that affect people with diabetes. I am so glad I was able to spend the weekend with you!
Thank you Stacey. Ditto’ing what both Cara, Sara, & Tricia said.