Am I allowed to be angry about having diabetes?
My post about my insulin pump failing 1-2 times a day while I was on vacation hit Hacker News, and then BoingBong - which I'm not a fan of, actually. A lot of the commenters on Hacker News seemed very scared about how angry I was.
I wrote the post entirely to confront an audience with that anger. I believe that this anger is politically expedient and that more disabled, medication-dependent people should embrace and voice their anger, in public, to audiences who are frightened and alarmed by it.
The United States has what amounts to globally very good disability infrastructure, and we owe that entirely to a disability rights campaign which involved sit-ins, protests, and loads of public anger. Anger is what will win you your rights. I've seen this in dozens of places in my life - including in unionization, where I've seen anger work much more swiftly and decisively than positive emotions. I believe our society requires much more public anger about healthcare specifically than we tend to socially permit one another to express - and people here are already very angry about healthcare here!
When I sat down to write that post, I began it with a section about my anger specifically because I wanted it to come across as an angry post, and because I wanted it to be an arresting read. I do this pretty frequently! I am a complex person who feels many different things at the same time, and when I sit down to write, I choose which kind of feeling I'd like to surface in the post. When you get an angry post from me here, it's because I want you to see me being angry and to read an angry post.
I don't expect Hacker News, of all places, to be comfortable with this kind of anger. Tech suffers from an ideological alliance to capital - every engineer is potentially one of those "temporarily embarrassed millionaires" we often cite as the major problem with US politics. This type of person is sometimes primed to be very uncomfortable with anger against institutions, and very unreasonable about what a "good solution" to institutional failure looks like (for example, there were people there posting about taking around entire backup insulin pumps - not something many diabetics even have). I was not surprised to see many people in the thread misrepresenting things I did, probably willfully, to try and make what happened to me seem more foolish, unlikely, or self-inflicted than it actually was.
Inconvenience in accessing medical supplies is a negative feature of the US healthcare system! It should be fixed - including for me, the angry patient. It was particularly funny to see people claiming that I lied to the Tandem customer service rep and "actually had no plan" to take care of myself. I did have a plan! I told it to her! I wasn't excited to execute it, but that doesn't mean it wasn't real or didn't exist. It was a plan compromised by the fact that the specific insulin I was prescribed was spoken for on the day after Memorial Day weekend in the 25 miles around Flagstaff. And the crazy thing is that despite all this, it seems that my lines in the sand were all drawn correctly, and I got home safe and sound. I'm still allowed to be angry that I had to do that!
I was also unsurprised to see those reddit-ass diabetics I referenced coming out of the woodwork to criticize my decision-making. Diabetes is very scary, and it tends to produce people who are self-reliant to the point of it being very nearly a personality disorder. It's very self-soothing to be able to tell yourself that you do not need to rely on anyone or anything to live, and that you are so smart and good at planning that nothing surprising or scary will ever happen to you. I want to encourage these people in particular to be angry rather than self-soothing, and to express that anger. You are allowed to hate the way you're treated. You should hate how this disease is managed in the United States. Your hate is politically powerful and will keep you safer in the long run. I believe that you should be polite to the individuals who need to keep you alive, but reserve your hate for the systems that design, manage, and supply your imperfect and annoying medical equipment. The inconvenience you live with should make you furious, and it should impact your politics.
If you could read through my entire post and still believed that my hate was something I let show accidentally, or something that I would not have shown you if I was in my right mind, you're just wrong! Sick people should hate more.
And finally: I want to take aside the one person I saw posting that they bring literally all their foster daughter's backup supplies even when they go thirty minutes away from home. You need to go to therapy. This is not normal, and it is not keeping your child safe. Harmful overprotectiveness is a very classic cause of (and result of) caretaker burnout for parents with diabetic children. Your child needs to live a normal life, which means allowing them to go away from home without a fully loaded-up backpack. A pump can be turned off or disconnected for thirty minutes - or more, even! - and it won't kill or really even hurt you. Please: let your child live a little!
One of the things which motivated my decision-making, as I pointed out, was the fact that my pump restarted every time, my blood sugar was basically 100 mg/dl the entire time, and I was never more than a reasonable drive from an emergency room. I have used emergency rooms for diabetic emergencies in the past, and know what it's like! For me, my line in the sand was "pump doesn't restart." At that point, I would have gone to an emergency room and probably received a very prompt Lantus shot. They got that shit in the hospital. You can rely on other people and on social systems to keep you safe. You can and you should. And when they fail you, you can and should get mad at them.
You are not, in fact, alone. You are part of a community, which means that you can make angry demands of it.