Diabetes Blog Week Day 4: The Healthcare Experience

Click for the The Healthcare Experience - Thursday 5/19 Link List.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

With today's topic, "The Healthcare Experience," I could say something about my years-long battle with my endocrinologist until we reached a pleasant détente (mostly when I got better at management, rising to meet standards). In fact, though, my “Understanding the Endo” piece from the other year gave me a certain sense of closure on the whole thing, as I tried to, and eventually did, see the world through her eyes. Now, my endo actually commiserates with me about my situation, and our visits are relatively pleasant.  

However, there is one line from a visit from my college years that I will never forget or get closure on. I have said it many times, but that’s because the line, delivered to me in all seriousness and frustration, is forever stuck in my memory: “I don’t know why you can’t just do this!” If there’s a reason to write my blog, it’s to show that, while we can and often will do anything, achieve anything, there’s no “just” about it. 

One of the pieces of the healthcare experience is dealing with health insurance. Let me show you why “just” doesn’t cover it, even in this detail that shouldn’t even be a part of our health maintenance worries. 

Where I work, depending on my course schedule, semester by semester, I am either in the union or not; I either have health insurance, or I don’t. I do not find out what contract I am given (or if I will be given one) until as late as the last day of the last week of the previous semester. My schedule is subject to change, and if I am given an extra class or if a class is removed from my schedule in the first or second week of the semester, I can lose health insurance on a moment’s notice. If I teach 7-12 course hours a week, I have health insurance. If I teach 13-15+ hours, I lose my union protection and my health insurance. That’s right; if I am given a more difficult teaching schedule (a “sessional”) – I lose health insurance. I am also paid less per hour, so I may make less while teaching more and also not having health insurance. (There is a limit to how many of these sessional contracts I can be given in a certain period of time.) I have no control over my course schedule or contract type.

By the time I find out about losing my insurance, it is often too late to add myself to my husband’s insurance for the month (but thank goodness right now that’s even an option at all) because my insurance is paid on the first of the month and his is paid during the previous month.

Does your brain hurt yet? I have been going through this dance every four months for six years. It has, paradoxically, nothing to do with my diabetes management, but everything to do with my ability to manage my diabetes and my mental health/stress.

This is not meant to bash any specific employer; many institutions work this way, but those are the facts. I am grateful for employment in my field. I like working where I work. I love my subject and I love teaching; I’m quite good at it, and nearly all of my students love me. I put my heart and soul into my teaching, and I spend far, far more time on each course than the “course hours” would tell you – each course hour is probably at least 4-5 real hours. 

I also live in Canada, where when I snapped my elbow in half, I walked away with a $65 charge for a fibreglass cast replacement, $20 for a sling, and a few pain medications (the latter, and the physiotherapy, I did need insurance for). The initial assessment and two surgeries were free, instead of being literally thousands of dollars like they would be if I lived across the border in the United States (I am a dual citizen and lived in the States for school during the first seven years of my adult life. Until healthcare there regains some sort of sanity, I do not think I can return). 

I take a lot of expensive medication (diabetes is hugely expensive), so insurance is still a necessity. I receive government help (THANK YOU) for my pump supplies, but it doesn’t cover insulin or any actual medication. There are a million caveats and appendices. Insulin is free if you’re receiving it as treatment in a hospital. Self-care? You’re on your own. The plastic parts of the pump are covered by the Assistive Devices Program. The life-giving insulin that is the raison d’etre for the entire plethora of plastic? You’re on your own. None of it makes a lot of sense, which makes it the perfect companion to diabetes management, which also does not make a lot of sense.

The teaching situation is a lot like diabetes management. I also put my heart and soul into my management, and the number of decisions and moments I spend thinking about it are at least 4-5x the measurements or moments anyone is aware of. It’s unpredictable, and it can change at a moment’s notice. A number of factors can lead to a sudden addition in my “course load.” I don’t have all the information I need in a timely enough fashion to make a lot of very important decisions. 

I find out some important numbers every 3-4 months, but they might not have any bearing on where I am four months from then. Too much management may have diminishing returns. Too little management will almost assuredly go poorly. It’s off-schedule and capricious, but if you can get it right, it sings.

The healthcare experience should do its best not to add further layers of difficulty to an experience that is already difficult. The healthcare experience surrounding our own management should be an invisibly supportive hand, a perfect weather day where you can’t feel the weather, rather than a gale force we have to walk into. 

In the cartoon series Futurama, the robot Bender finds himself filling the role of God for a tiny civilization. A more powerful entity tells him, “When you do things right, people won’t be sure you’ve done anything at all.” I think that’s where the “just” comes in. People notice mistakes much more readily than they notice achievements, because achievements in this case “merely” equal stability and “normalcy.” We notice our frustrations with the healthcare system more than we notice when things go right, and our healthcare providers notice when we’re out of range more than our hard work to keep things steady. 

I just wish it didn’t have to be that way.