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The Invisible Disability: The diabetic academic manifesto

Whenever I fill out a job application, there are those little demographic questions at the end and I’m always a bit stymied. They ask if I have a disability that should be taken into account. I don’t, but in the world of academia I feel like I should say yes. I’m diabetic, and post-PhD it’s starting to become a tangible hindrance for the first time in my life.

Ever the optimist, I tend to dismiss the cases in which the fact that I have a chronic disease directs my decisions. But lately, the cases have piled up to the point I need a cathartic moment to vent. And while a personal subject, I hope my thoughts can be either enlightening or instructive to those thinking about personal health in the ivory tower. Because that’s part of the problem – something held close because it’s personal keeps the issue out of public discourse, which is precisely where solutions might someday emerge.

Stereotypes, Shame, and Genetics

First, let’s start with perceptions of diabetes, even among the educated elite. Test yourself : picture a diabetic person. For many, I imagine the mental image forms around an overweight person slouched into every square inch of a chair, mindlessly eating a whole box of cookies while binging on a television show. In this case, the judgment swiftly follows – they should get off their butts, put the cookies away, and take care of themselves. If they got diabetes, they deserved it.

Well first – that’s a different disease. Type 2 (also known as adult-onset) diabetes is caused by overuse of insulin receptors. Insulin in the magical hormone that unlocks sugar metabolism in the bloodstream. When you produce too much, the receptors get overworked and eventually stop working. Enter type 2 diabetes. So when, at the office holiday party, someone complains that the massive candy bowl is going to give the whole office diabetes, this is the form they’re referring to.

Type 1 diabetes (also known as juvenile diabetes) is a genetic disorder typically identified at a very young age. In our bodies, the cells that produce the magical hormone called insulin were incorrectly identified as invaders by our slightly over-enthusiastic immune system and removed like the common cold. It’s an autoimmune disorder caused by confused white blood cells, not my love of sugar.

Rampant confusion of these two diseases, combined with the fact that only a tiny percentage of diabetics have type 1, means that diabetes is not something I ever want to bring up in casual conversation. I escape after a meal to the bathroom to take my synthetic insulin and go about my day. If I bring it up as part of a story or discussion of medical care, I often get a surprised raised eyebrow. I can feel the judgment, the stereotype associated with ‘the other diabetes’ engulfing me. This has even happened with a physician as well as a number of PhD educated colleagues. And then I explain, in a speech honed at age 2 to remove myself from the stereotype of irresponsibility.

Continued Care in Postdoc Life

While misunderstandings set the foundation for my current experience, it’s something I’ve grown used to. Yet, given that most endocrinologists and diabetes educators deal primarily with type 2, it takes a long time to find a type 1 specialist who can manage my case. It’s partially a matter of preference in who is taking care of my body, and partially a matter of medical protocol.

Starting care at a new doctor requires a standard blood panel, well-visit physical (you know, the one where they weigh you, take your blood pressure, and talk through family medical history), and the urine-in-a-cup test. Because I’ve had 3 insurance carriers over the last year, I’ve had this scan 3 times. “You’re very proactive about your health”, one medical receptionist told me. Well, only because I have to.

There are many different ways to administer insulin, and some schemes work better than others. I’ve been on the same regime for 15 years and would love to try some of the awesome new technology that’s been released recently. However, it takes 6 months to get approved for an insulin pump and another couple to train on its use. My job (and that particular insurance) will be over right around the time that time sequence is up, so doctors are hesitant to start me down that path. I’ve started down it 3 separate times, but had to stop and re-start with each new insurance and doctor. I have reams of paperwork that prove I qualify, but requirements are just different enough in each case that it must be repeated.

At this point I’m not receiving the best, most up-to-date care as a result of structures intended to do just that – but built for a person rooted in a single location. Just like my research that starts and stops with each opportunistic fellowship, my health care stops and starts with each new city I add to my repertoire. What I have become certain of is that I’m the most knowledgeable person about my case, but that no one will listen.

International opportunities, insurance and ‘introductory periods’

The straw that broke the camel’s back in my healthcare sanity (softened slightly by the new illegality of pre-existing conditions clauses thanks to the Affordable Care Act) was becoming acquainted with an at-will state. This means that during the first 3 months of employment, people receive no benefits – health insurance, life insurance, or even sick leave. While couched in the premise that the period, sometimes called ‘probationary period’, allows both employee and employer to determine if the relationship will be successful, in reality it’s an exploitative practice giving more power to employers, who can fire their new employees with no warning.

I had the good fortune of receiving a bag full of insulin and other medical supplies from a kind nurse who knew more about where I was headed than I did previous to my introductory period. This bag lasted exactly 3 months before I could start getting acquainted with a new physician.

America’s odd system of private insurance is partially to blame here. Stringing together temporary jobs would be much facilitated if I knew I could visit a doctor in the weeks between those positions, perhaps even covered by the federal government.

The question of other countries often arises in the academic career path as well, as fellowships and opportunities open overseas for educated expats. However, foreign employers don’t offer their employees health insurance because they have nationalized health care and it’s not their responsibility. And as an American citizen, I don’t carry my own country’s insurance – because it doesn’t exist. So people like me get caught in an international loophole.

Not to mention that the potential of tropical developing countries is wiped out. Take, for example, many of the South Pacific Islands like Fiji. One of my colleagues once described the conservation community there as ‘so thick you can’t swing around and not hit a conservation colleague’. They’re doing all sorts of interesting things around traditional ecological knowledge, marine reserves, climate adaptation, etc. I could go there for fieldwork for a few months, but live there? No reliable access to insulin. I’d have to fly to New Zealand to get it – and on my own dime (unlike local citizens) because I wouldn’t have insurance. Professional hindrance? You bet.

Here in the US, the academic job market is somewhat grimmer. The army of adjuncts that structure university function are not offered insurance, as profiled in several recent cases of egregious health oversights on the part of university employers. For me, that path is terrifying and financially untenable. All sorts of adjuncts have a really rough life, but mine would be that much harder.

Health Rant Over

For years, I never considered myself at a disadvantage. I’m healthy, active, and productive. Diabetes is as integrated into my life as much as someone else taking an ibuprofen at the onset of a headache. But the economy of academia right now highlights that maybe I do have special needs. So perhaps I’ll check the box on those job applications and say ‘stability’.

Update: A friend has pointed out that many large international nonprofits provide insurance to their American employees, so I should continue to leave my overseas options open. While he’s correct, the issue still remains. International nonprofits are not be responsible for American health insurance and are providing it with a keen eye to the healthcare landscape as a means of recruitment. It’s still a disincentive for hiring smart Americans on their end.