I sporadically have those moments at work, in the car, at a coffeeshop (anywhere, really) that I come up with what I think are interesting observations/experiences that I would like to share with others. Recently, a lot of that consists of are my experiences as a T1 diabetic. …No, I don’t mean sharing the story of my diagnosis or stating how “strong” I think I am because of my condition. I would rather share how I have had to literally survive based on my personal account. That unique experience includes being one of the many individuals getting screwed over by high deductibles, not being able to count on my parents assistance at all, not having anyone or anything substantial to rely on.
T1 diabetes is a bitch, no matter what angle you look at it, but something I have begun to notice more and more (as T1 diabetes is gaining a little more recognition than it use to), is that it’s a bitch single-handedly because not everyone has the guarantee that they will have access to life saving medication, let alone modern day therapies and technology. Not everyone has the ability to think act on the thought that, “I won’t let my diabetes get me down; I’m going to live my life” when they may not be able to cover the most basic form of therapy . For T1s, that means your pharmacy bought insulin vials and syringes. There are those of us who have to balance out our paid checks for rent, bills, student loans, food, car expenses…and of course, our necessary diabetic supplies when it feels impossible to make ends meet.
An insulin pump, a continuous glucose monitor (CGM), an Apple (R) watch that wirelessly connects with our CGM, a Genteel (R) finger picker, and other gadgets I do not keep up with are not fiscal options for many of us with T1. Though many from the #DOC may disagree with me, I regard these items as “luxury items,” because no matter what, I simply cannot afford them and I know I am not alone. That is where I say that due to those financial limitations (a reality for many) YES, diabetes and its costs will hinder me. A LOT. If people think it’s just a mental thing, it’s not. Finances I’d say, play a pretty equal if not greater amount to that hinderance, which ultimately gives me little flexibility with medical options, as well as with other things I may want to do in life. This is where I completely agree [in part] with Insulin Nation’s article: Five Things People with Type 1 Should Stop Doing Already. Below is the section.
1. …saying they won’t let Type 1 diabetes stop them/slow them down
Why: First, it’s a cliche, and cliches raise my blood pressure.
Second, it’s a sneaky form of ableism. When you say someone “won’t” let diabetes stop them, you imply that everyone with Type 1 has a choice to do whatever they want in life despite the condition, and that’s always not the case. I’ve interviewed professional athletes who were “stopped” by Type 1 diabetes for a significant period of time, despite their best efforts.
My main point to drive home is the reality that not everyone has that choice to live to their best potential with their diabetes. That, I believe has nothing to do with you being optimistic and “kicking diabetes in the butt”…if one does not have their most basic needs met, then no shit you are going to feel insecure and incapable of being well. For me, my insulin + diabetic supplies are part of my fundamental 1st tier. No insulin, no life.
In the last ten years, I have had the same version of the Medtronics Minimed insulin pump. The only time I got a new one was because my first pump
still had a warranty, but it died my freshmen year of college in 2011. The pump currently connected to my side is still kicking from 2011, which is a miracle all in itself. However, once my 2011 pump decides to stop working, I will need to purchase another insulin pump with the likelihood of not getting most of it covered by my medical insurance. Big deal, just use shots–right?
To go from using one form of insulin therapy to the complete use of another would be a shock to anyone. It is like going cold turkey on not drinking or smoking. It is not easy. It can be done, but our bodies have grown accustomed to how one therapy form benefits us. T1 diabetes is a constant trial and error episode put on repeat. But then, there is the whole notion of insurance companies wanting diabetics to start using biosimilar prescriptions that have generic versions of the prescriptions I need. Kara, from Bootcamp for Betics, goes on in more detail about insurers bringing further limitations to us without understanding the repercussions that plays on our day-to-day life.
In the last few years, I have seen the T1 community grow in social media; people are sharing more of stories and reaching out for help. I have seen how new organizations have started to provide support and answers to some of the many pressing questions we face. I have seen that I am not the only one who cannot get her A1c down, but like everything else we post onto our social media accounts, I keep seeing our picture-perfect captured moments. I know that there is always a black and white side to things…but in all seriousness, I keep going back to that phrase: “Type one won’t get me down.” Maybe emotionally, it may not from time to time. As long as we have our most basic needs met, yes, we will endure. However, I cannot tolerate the idea that all it takes is just a good attitude to survive. No, I only wish it was that simple but that is not always the case.