Someone I know posted the following today on Facebook after news of Robin William’s Parkinson’s diagnosis broke: “If you should choose to take drugs and abuse alcohol, one of the many consequences is brain damage causing Parkinson’s.” How heartless. And wrong. It must be nice up there on that high horse.
For the record, there is no scientific link between drug and alcohol abuse and Parkinson’s Disease (PD). (There are, however, links to things like exposure to pesticides and clinical depression. And the medications used to treat PD can cause new substance and non-substance addictions to emerge.) It’s in part because of judgmental attitudes like this (what we refer to in disability studies as “the moral model”) that people with chronic illnesses and disabilities become depressed and attempt suicide. There is plenty of evidence that points to a significant increase in the risk of suicide among individuals with multiple chronic conditions, particularly those over 65.
If you’re feeling hopeless, please seek help. Depression and pain cast a dark shadow that can be impossible to escape without assistance. No matter who you are, or how broken you feel, people care about you, and they want to help.
That life is complicated is a fact of great analytical importance. Law often seeks to avoid this truth by making up its own breed of narrower, simpler, but hypnotically powerful rhetorical truths. –Patricia Williams, The Alchemy of Race and Rights
Leslie Rott recently published a piece on the accessibility (or lack thereof) of a campus disability services office and the message that sends to students with disabilities. I see situations like this on campuses all the time. Sometimes the only accessible entrance is at the back of a building, or it requires a lengthy walk to get to from the so-called “accessible” parking. It’s depressing and offensive (not to mention often illegal). In many cases, “getting in the door” is a lot more complicated that just stepping (or rolling) over the threshold.
I spend a lot of time thinking and talking about “healthcare access,” but I don’t always think about all the dimensions of what that means. Usually I think about it in terms of insurance coverage: does someone have adequate insurance to cover the doctor visits, medications, and possible surgical procedures. Sometimes I think about geographical or numerical scarcity: for example, there are states in the US without a single pediatric rheumatologist. But there are other, much more insidious barriers to access that are harder to talk about, and that makes it harder to imagine solutions, or even convince people that the barriers exist.
Sometimes the biggest barrier to accessibility is the attitude of the provider, usually a lack of empathy for his or her patients. A few months ago, I wrote about being a medical “Zebra,” and the challenges that come with seeking medical care as a patient with multiple rare (or complicated) diseases–in my case lupus and an unusual form of RA. As I noted then, some of the biggest challenges for people with chronic illnesses stem not just from symptoms and coordination of treatment , but from our doctors. Striking a balance between being an engaged patient and a “compliant” patient is frequently hard to negotiate, and doctors are rarely interested in having their opinions questioned or refuted (even when their opinions fly in the face of evidence-based medicine), especially, in my experience, if the patient is a woman. I was reminded of this again when I read (and raged) about one patient’s experience trying to seek care from a pain management clinic over at “Never that Easy.” Very few chronically ill patients actually want to take high powered pain killers, and yet they are treated like addicts and criminals simply for seeking pain management care. Often patients are required to produce a urine sample–in front of a security guard or police officer–just to receive care at a pain clinic, regardless of whether or not they are seeking opiate medications for pain control. This is an embarrassing and dehumanizing way to restrict access to necessary medical care.
Sometimes provider attitudes come out in other, more subtle ways. For example, a few years ago my rheumatologist suggested I seek a second opinion from a different gastroenterologist than the one I normally see. While I was filling out the intake paperwork, I noticed that there was a whole section that seemed to be about recreational drug use. Except in this case, it wasn’t just about drugs; the questions grouped together recreational drug use, prostitution, and homosexuality. While I understand how the behaviors commonly associated with each of these can put people at high risk for certain diseases, and why they might be grouped together for public health research or interventions, I was shocked and appalled to see that grouping on a medical intake form. As a result, I omitted the fact that I had been in a long-term relationship with a same-sex partner because I didn’t want to have that conversation with that doctor, fearing that he would condemn my “lifestyle,” refuse me care, or ignore and belittle my symptoms because of who I was and how I identified. Perhaps it was just a generic form, and neither he nor his staff had ever thought about it’s impact on LGBT patients. I was not particularly interested in finding out the hard way and throwing myself in the path of discrimination.
A close friend of mine had a similar experience today. He has overlapping autoimmune diseases that require the care of an endocrinologist. He recently moved and is now seeking a new doctor. He also happens to be transgender and he is taking hormone therapy. For reasons that are not entirely clear, he has been refused care by the endocrinologist in his insurance network because of his gender status. Is it because his case is “complicated” and the endocrinologist doesn’t feel comfortable prescribing medication for someone who is taking hormones? Maybe. But providers don’t usually deny care to women taking birth control. Is it feat of litigation if there’s a drug interaction? Maybe. But I suspect it’s much more likely that the initial concern about a complicated patient with multiple condition is amplified by the provider and his/her staff’s discomfort over having a trans person in their practice. Did I mention that my friend needs to see a doctor in order to be cleared to get his drivers license in his new home state? If that isn’t about accessibility, I don’t know what is.
The next time I speak about healthcare access with someone–whether that person is a friend, a colleague, or an elected official–I’m going to think hard about what I mean, and about what access means in the context of how providers interact with their patients. Because access isn’t just about getting rid of specialty tiers and reducing co-insurance. It’s about finding ways to identify and fix problems like brutal and embarrassing testing, physically inaccessible spaces, and outright discrimination that’s rationalized away by the claim that a patient is just “too complicated.”
We are all complicated, Zebras or not. And we all deserve appropriate, accessible medical care. Never forget that the goal of healthcare, and healthcare providers, is not necessarily to cure, but to allow all of us to flourish.