Thoughts on health care, equality, and the “American dream”

I’ve been thinking about this topic for awhile, and after reading (and, okay, responding to) a Captain Awkward reader letter about science, jobs, and career/life fulfillment, and after the news that the US Supreme Court has deemed most of the Affordable Care Act to be constitutional, I thought…maybe I’d put down a few thoughts here.

Growing up, I always understood “the American Dream” to be this: work hard, and your success will be rewarded. Study in school, go to college, and you can get a job that lets you support yourself and your family without worry for the future. Talent and innovation will be rewarded. Laziness will not. Failure is okay if you keep trying – you won’t get ahead by failing, but you won’t lose your dignity if you’ve given your all, honestly, in pursuit of your dreams.

There are two strands of thought I want to follow:
(1) Academic achievement is undervalued in the United States. In our current strained economy, it is astonishing that talented, bright, accomplished PhD holders can’t find jobs, and that the jobs they do find – usually hard won – may not pay the bills, including health insurance costs, as employer-provided health coverage is a benefit not provided to some college instructors. This, while we struggle with our students not keeping pace with the science, technology, and interpersonal skill that the changing economy demands, and which these PhDs are qualified to teach.

(2) The cost of a basic safe and healthy life is too high for too many people in our country to claim.

***

The United States is in the throes of campaign season for our upcoming 2012 national/presidential elections. Our Supreme Court has recently decided on constitutionality questions including whether recently passed health care reform law violates our Constitution, marriage equality, and how money gets used in politics. Our economy is formally not in recession, I gather, but we – and a lot of the rest of the world – have a lot to do to clean up after some of our recent financial problems. Pundits are talking about income inequality and the collapse of the middle class, and there’s a weird tension about “we need jobs” against “we can’t spend any money, even for jobs”.

I’m a scientist, and I like using data to answer questions and explain things that I find striking. I like the idea of using data patterns to help establish policy. My opinion is that the important data here are the stories – stories that are anecdotes on their own, but can add up to quantitative data.

So here’s my story:

I grew up in a loving, supportive home. My folks encouraged me to do well in school, and helped me to do it. (I have the red-penned papers to prove it!) After graduating from a prestigious college which granted me merit scholarships but required a reasonable loan, I went to grad school and earned a doctorate in biology. I found a job, coming out of my graduate work, doing the research I love and am good at. During that job, I struggled with my health, and ended up with a diagnosis of fibromyalgia during an unpaid medical leave.

Right now, I am in danger of not being able to pay my bills.

My employment status had to change due (at least in part) to some technicalities that actually have nothing to do with my health, so I no longer have employer-subsidized health insurance. (This would apply to anyone in my kind of job who needed extra time to work on a project, if that time were not exactly one year.) I was eligible for COBRA, and signed up, so I am still covered. I am taking multiple medications to help control my joint and head pain and nausea (I am vomiting one to several times a day, which my newest prescription helps moderate), and have both a primary care physician and a rheumatologist monitoring me (and might need to go back to the neurologist). It’s clear that having coverage is extremely important. What that means is that I’m paying a scary amount maintain my health insurance, every month. (For what it’s worth? $750 per month. And I live in a place where that can be rent for an apartment for a month.) (Also, with my shiny pretty PhD, I apparently earn less than the median income (see Table A) in this country…as of 2009. I should make something around the median next year, due to a raise, although I am told to expect an increased cost of living where I will have to live for this job.)

This isn’t how I imagined my life. Didn’t I do everything right? How is it that I achieved what most people in my country understand to be one of the pinnacles of achievement – a PhD – and I have trouble paying my bills? How is it that I make less, after all of this schooling and work, than a lot of people in other fields who have earned a bachelor’s degree? (Please note that I am happy that other people make money, and I really don’t have an interest in making very much more than I do. I just find it fascinating that my credentials are both highly esteemed, in my title and the respect people express when they hear it, and yet not particularly valued, in terms of my salary and the cultural disrespect for professors and professional scientists as amoral and tending to indoctrination.) I have ideas of my own, and agree with some of the ideas espoused by scholars and non-professional observers, but I remain a bit bewildered.

Why do I feel like my American dream can’t come true?

Look, I know that my family is a bit unusual, in a lot of ways, including our collective medical needs. But we are also like many (most? all?) families in the United States: we work, we play, we try to be good citizens and friends and people, to give back where we can and to pull our own weight.

And yet my family and I are not unusual: we struggle to afford health insurance, and sometimes to pay other bills. (Sometimes we struggle to pay for other bills because we prioritize spending on health insurance.) There’s a stat in the CHE article I linked above, from the USDA: In 2010, a total of 44 million people nationally received food stamps or some other form of public aid. We’re a nation of ~310 million. We’re a relatively rich nation. It’s mind-boggling to me that we should have 14% of our population in need of help – more than one in ten. According to the US government, nearly 50 million Americans do not have health insurance, poverty is higher than at any point in nearly 20 years, and wages are, in effect, declining.

I don’t have the heart, today, to talk about the disproportionate effects of the current system on women, people of color, people with disabilities, people who don’t fit into the gender binary or are otherwise sexual minorities (I’ve now seen this described as the QUILTBAG community), and people (like me, and like my sister, and like people I know and love) who stand at the intersection of one or more of those groups. (Or the other issues that are described in this comic that I don’t totally disagree with.)

I am thankful that I am so lucky: despite struggling with my current job during my diagnostic process, I found a new job that I should be able to handle, and it will provide health insurance for me with a very reasonable contribution on my part. My job should better position me to do what I can to help give back: to teach, to volunteer, to do good science that furthers our common knowledge and promotes progress. I am hopeful that the changes in our legislation to reform our health care system help us to make progress, and help people who need and want health coverage to get it. I am hopeful that other changes that are in progress or in reach can help make the American dream achievable for all Americans, including those we welcome from other places. My friends – including small business owners and fellow academics – are all okay, for now, as are my family.

So, yes, I’m hopeful. But I’m not holding my breath, especially since we are each a single emergency – illness, accident, flood, fire – away from financial trouble.

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4 Comments on “Thoughts on health care, equality, and the “American dream””

  1. rachel demots says:

    I am not sure if you are still keeping up with your blog but your posts gave me some hope.I too am finishing a PhD in biology and have been afflicted by fibromyalgia for over a year. I am in the writing stage but am terrified I may never be able to finish with my current health status. How did you muttle through exhausted and in pain? Any words or advice on how to cope? If I dont finish I will be financially ruined….

    • Elysia says:

      Hi, Rachel! I am definitely still here. ๐Ÿ™‚ My empathy about your situation – sympathy for the sucky parts and “I know that feeling” for a lot of the other parts.

      So, about what you’re going through…even if you did not have fibro, in the writing stage, you would likely feel ridiculously tired and awful. This has been my experience with many of my colleagues and friends, and I imagine you’ve seen it in others, too. ๐Ÿ™‚ I say that not to belittle what you’re feeling, but to (hoepfully) reassure you that feeling awful is not just the fibro. For me, it really helps to know that sometimes, it’s not that I have this weird thing that nobody else has that makes my life harder, but that I’m experiencing what many others are experiencing, and the fibro is a modifier.

      I didn’t know that the reason I was so tired during my last 2-3 years of grad school was the fibro, so what I went through then might not be helpful to you now. But I just wrapped up a postdoc and have made it through my first week of a lecturer position, and I can tell you what helps me continue with this academic life. One thing is exercise: I try to walk everywhere I have to go, within reason. I did try to swim when I was finishing, which is calming for me. It’s sort of weird, but my last neurologist said it might help a lot, and that it helped his wife (who also has fibro), and it really does help.

      When I was finishing, I also sort of lived by to-do lists. Writing seems impossibly huge, I know, but if you can break your writing tasks down into smaller bits, you can match your day’s tasks to your day’s energy. Maybe that means deciding on all of the figures and tables for a chapter between 8am and noon, so if you finish by 10am, you can take a nap or go for a walk or do something else to clear your brain. A to-do list or a detailed schedule can also help you plan enough time to recharge while getting stuff done. And I promise: it seems like an insurmountable task, often, but it’s something you can do, this finishing business. Many people have invested time, energy, and money in you, and they are all there to help you succeed – if you weren’t capable of finishing, they’d make that clear. Fibro intensifies the bad parts of this time for you, but that doesn’t mean it’s going to stop you. (Can you tell I’ve been teaching this week and am in cheerleader mode? :-))

      I also want to say that I LOOOOOOVE my current medication. I was put on nortriptyline because I was getting 3-5 headaches a week, and they had elements of migraine, tension, and sinus. Plus, we hoped it would help manage my anxiety. I’d been on Zoloft before, which didn’t do much for me except make me gain weight and keep me barely okay, but for me, changing meds ended up in less pain and feeling more alert and awake, and able to exercise or even just THINK. I still have pain, but now I feel strong enough to cope. If you don’t have a doctor that you trust and can talk to – any MD, specialist or GP or whatever – I’d really encourage you to take some of your very precious time away from writing to find one, because if there are medical supports that can help you, they’ll make the rest of the writing go better. One of my friends got frequent massages – possibly every two weeks? – to help stay chill during writing. I’ve heard from a bunch of people that acupuncture works wonders for fibro, and one person who recommended that was a postdoc in my lab, so maybe that’s an option, too.

      * As another biologist, I will also say that my brief survey of the fibro literature makes me think more and more that while the symptoms may frequently be rheumatological in nature, there’s something about the current state of the field that makes me think that the deeper causes are neurological.

      Finally: do you have a support network? The phrase I learned from Captain Awkward was “Team You.” I had a great psychologist who helped pull me through my writing, and some friends who could go out to dinner with me or grab tea, just to help break up my day. Right now, I have a friend who turns out to have a different chronic pain condition, and we reach out to each other when things get bad, because it is so extremely helpful to talk to someone who Gets It. I hated relying on others to cook for me, but I did get a lot of take out and frozen food from Trader Joe’s at that time, which I do now on days that I recognize I need food but am otherwise too tired or in too much pain to cook. Those resources were part of a casual support system for me. And yeah, money was tight and I ended up staying for a couple of weeks with a friend in order to save money on rent, but I made it.

      I would ask you how well you get along with your advisor, but…I know that’s only sort of helpful. Most of my mentors have not reacted well to my sharing any medical news, even just “I have to have a minor procedure but it involves anaesthesia, so I will be out for 1.5 days.” Sometimes, the people I most wish knew about what I was facing have been those it’s been most inappropriate to tell. My undergrad research advisor and I have kept in touch, though, and she’s been a much more helpful support, and knows about my diagnosis and the struggles I’ve had since. I guess my point is that if you can find a supporter within academia, that’s superb, but don’t feel bad if you can’t.

      Best of luck to you! Definitely leave more comments here if you wish, or send me a direct email – I have one set up just to deal with this blog, and I’d be happy to talk more there if you’d prefer. What you’re going through is huge. I hope, at least sometimes, you are able to remember that it’s not just about the consequences of not finishing, but about how amazing it will be when you are done. If you’ve come this far, you absolutely can finish!

      • I just re-read your response again, as I am nearing the final FINAL push of my dissertation, and it has been so helpful. Thank you so much again.

      • Elysia says:

        Oh, good! That FINAL push can be rough, but you’ve done this much – hang in there! There’s actual light and air on the other side. ๐Ÿ™‚


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