Professional Patient

But what happens when, due to a serious chronic and debilitating illness or injury, we are no longer able to conform or obey because our illnesses direct our lives?  What happens when our ability to consume is hampered because we no longer have an income?

Here, in the face of serious and disabling illness or injury, the coercive reality of our station is writ large: the new role to which we will conform is that of a professional patient; we will consume medical goods and services whether we want to or not and whether they improve or further damage our health or not; and we will obey this mandate or, without means to supply ourselves with food, shelter or the necessities of life, we will be left to die.  This is the foundation and essence of the disability-based benefits structure and it is very real indeed.  As a seriously ill Crohn’s patient, this is my current (and likely future) station and I am furious about it.  Recognizing my immense vulnerability as a disabled person I am also saddened that it has come to this, horrified that I will be unable to stop it, and terrified for my future.

Cannabis Refugee

After writing yesterday about Crohnomics, a friend pointed me to the article excerpted above. Its author maintained the old radical feminist Femonade blog until she got more interested in writing about being a “Disaffected Crohn’s Patient, Cannabis Refugee, Attorney” and medical-industrial resister. Unlike the author, I do not think immunosuppressant drug infusions “give you AIDS“, and lately I strive to avoid the words “patriarchy” and “capitalist.” I nonetheless find her writings compelling and insightful.

The thought of being a medical patient for life, leashed to the hospital, costing “the system” many times what I will ever earn, has been a blow to my self-esteem. Have I become a mere parasite?  NO! Quite the opposite.

“Professional patient” sums up my new life since my Crohn’s diagnosis. Thus far I have been more than willing to “submit to painful, stressful, dehumanizing and even dangerous medical testing and examinations; impersonal bureaucratic evaluations and determinations about your condition; and usually, to accept treatment.” Apparently, this is how I contribute to the economy. Not by being actually productive in any way (the arts, while being a crucial part of society, never paid well despite my productivity) but by being a reason doctors, nurses, medical technicians, pharmaceutical salespeople, researchers, scientists, patent lawyers and others have jobs. Without patients there would be no medical-industrial complex. Without a medical-industrial complex, there would be no treatment of expensive infusions, and no accompanying hope my Crohn’s disease might go into remission so I could someday be able to eat real food again.

Crohn’s sucks, but at least I have a “job.”


Author: Nina Paley

Animator. Director. Artist. Scapegoat.

2 thoughts on “Professional Patient”

  1. Nina, I feel for your situation. I have spinal stenosis and IBS and am on disability. I lost the ability to work several years ago. At least I have a partner who helps take care of me financially. But I do feel useless, and I do lay in bed wondering what the endgame will be. S–cide is always an option but I keep putting it off. I can still walk, drive, cook and quilt, even if some of those things cause pain. I have a planner filled with medical appointments. Sleep eludes me. Waking up in the afternoon sucks. My toes are totally numb so I often trip. I’ll eat dinner and throw it up at 3am for no reason. It’s funny/not funny. Signed, A Fellow Professional Patient

  2. Hi Nina,

    I wouldn’t worry whether you’re a burden on the economy since all the prices are fake due to the massive distorting effects that government intervention has had on the medical industry. When I thought you had private insurance I was going to write “you paid your premiums and the insurers took those premiums with a very sophisticated understanding of the risk they were taking” but reading more I guess that doesn’t apply in your case. Regardless, you still did in fact pay into Medicaid and the whole point of insurance is the fact that some policyholders are expected to have outsized costs.

    Moreover, even though you getting Crohn’s disease is worse for the economy than if you hadn’t, (since those doctors could be helping other people instead of you), that’s totally no reason to feel bad at all since consequentialism is the incorrect moral philosophy! After all, you could always apply that argument to everyone who had a healthy set of organs, that society would be better off with them dead and their heart, liver, pancreas, kidneys, blood, etc donated to patients in need. I guess this is a good reason to be thankful that we live in a civilization that takes care of its deserving members in need and at least some remnants of capitalism in the medical industry.

    P.S.: I can tell you’ve been a bit busy these past few weeks but when you have time check out the email I sent you!

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