I met Russ at the Young Leaders in Diabetes training in Melbourne this past November. I should say, I met him in person. Russ is known as The Diabetes Cowboy in the Twitter community and we had communicated via Tweet, along with several other soon-to-be Young Leaders for several months leading up to the Young Leaders training. Once in Melbourne, there was an exciting buzz happening in the first few days when we made the face-to-face connections with people we’d known mostly by and through their pseudonym. ‘’Are you T1International?’’ Russ asked me. ‘’Yes, and you’re the Diabetes Cowboy!’’ I exclaimed.
We spent two weeks with other Young Leaders from around the world and had the opportunity to chat about what it is like to work for diabetes organisations in our respective cities, as well as the types of things that we want to see changed in the world of diabetes. It was wonderful to get to engage in these types of conversations and I wanted to give Russ a chance to tell about living with Type 1 diabetes in Canada. He discusses why he thinks Canadians are lucky when it comes to life with diabetes there, ways that Canadian organisations are connecting and helping people living with diabetes, and he shares some of his thoughts on stereotypes and the different degrees on which those of us living with diabetes let it become a part of who we are.
Take it away, Russ:
For disclaimers sake, I will say I can only talk about my experience and how I see it. Other things of note – I work in the “industry” of diabetes.
Living with type 1 in Canada I would say is fairly comfortable. After seeing and hearing stories at the International Diabetes Federation conference, I think that as Canadians we take a lot for granted. For example, things like access to insulin, testing supplies and adequate healthcare are available to anyone living with type 1 in Canada, while this is not the case for a lot of the rest of the world. Of course we do have our own horror stories, like this one, where people have refused insulin for their child based on personal beliefs. This story has yet to conclude, but my guess is that the parents will be held accountable and charged with some sort of neglect. This is by far an extreme case and one that is not common in Canada.
Cost can occasionally be a barrier, and people might skip testing or a shot to save some dollars, but there are ways to make it work. There are provincial systems in place to relieve some financial burden although they are rarely all-encompassing of strips, meters, insulin, pens, syringes etc. Canadians are in an extremely fortuitous situation with regards to being diagnosed. Many people see this as ‘the time in human history’ to be diagnosed. However there still exists injustice and prejudice which many other Type 1’s experience throughout the world. No more was this highlighted to me than at the International Diabetes Federation Young Leaders conference. Canadians are far better off than most countries out there. Insulin pumps? Continuous Glucose Monitoring? These technologies haven’t scratched the surface in some countries. How about devoting your entire day to getting insulin? And then having to keep it buried in the ground to keep it cool? We are very fortunate.
Aside from thinking about that, there is lots of advocacy and outreach that takes place in Canada. The big national organizations, Canadian Diabetes Association and JDRF, work with many community partners and volunteers to push for the rights of people living with type 1. Much of this work has led to new provincial pump programs and has highlighted the cost of diabetes on the healthcare systems to the government. Something that is a great opportunity for children with Type 1 are the diabetes camps across the country. The leader on this is the Canadian Diabetes Association and they offer 12 different camps from coast to coast. It is an expanding venture with D-Tour camps for the 15 – 18 demographic and family camps for the younger Type 1s.
From my experience as a young adult with Type 1, there does seem to be increasingly more opportunities to “hang” with like-minded individuals. While I do not blog, connecting face to face is important to me and has led to many lifelong friendships that I cherish. Groups like Connected in Motion hold regular scheduled outings that are based on experiential learning. These outings are more regular in the Eastern part of Canada (namely Toronto) while the West has a fewer events. Something that I think could play a vital role in involving the West of Canada and reaching out to people in rural areas is the Canadian Diabetes Online Community (CanDoc). While this is an online tool, it is certainly valuable to initiate contact to get the word out.
Personally, I like helping people and I like connecting people to resources and finding the answers to the questions they have. So, when posed with a question like “what is Type 1 diabetes like in Canada?,’’ it is a tricky one to answer and I am in two minds about what to say. There are people living with diabetes who are involved, engaged, intrigued, active, and loud and proud about their diabetes. On the other hand, there are people living with diabetes who are not. For those people, diabetes is a smaller part of them and they are perfectly fine with that. I think it is important to understand this individual difference.
I often think about whether there is something I am missing in my line of work that could help me find people that want something different for diabetes in Canada. Perhaps we need to address the stigma and stereotypes that exist across this nation. There are many, and diabetes is often misunderstood. There is no base knowledge for understanding diabetes, and it usually takes on the form of “You ate too much sugar’’, ‘’Sugar is bad’’, etc. I’m sure you’ve heard them all. Maybe there are plenty of frustrated twenty-something’s out there that we are not reaching…. or maybe they’re all too busy living exciting lives and it doesn’t bother them that much. One thing is for sure: there is still a great deal of action we can take. A first step would be addressing the stereotypes and aggressively marketing what diabetes actually isso that people understand that this is a serious disease. This would be done in hopes of reducing stigma and creating the base knowledge that is needed.
I strongly believe that “making diabetes sexy” will change the way it is seen in the general population. This was the idea behind the “Diabetes Cowboy”. It was a creative outlet to get across information that was important; a base knowledge as to what diabetes is. I called it “info-tainment”, which is a mash-up of information and entertainment. Taking a subject that most people misunderstand and injecting some life into the topic with the correct information seems to work. Not to mention I was looking for an excuse to wear jeans to work!
I guess I would be remiss not to mention the scientific research that is happening. I really don’t follow up on it though, because I guess I see a cure as a threat to who I am. This is, of course, an unpopular opinion with some folk. One way I heard it phrased, which I enjoyed, was that a cure would be ‘’the closing chapter on the book of diabetes.’’ Until that chapter is written, I will continue to live my life to the fullest with Type 1. It is part of who I am and I’ve decided to embrace it.
You can get in touch with Russ by Tweeting @diabetescowboy.