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.
I think this Buzzfeed piece on Liz Jackson and her petition to get J. Crew to carry stylish canes in their catalogue does a great job of explaining why the concerns of Disability Studies apply to basically everyone. We will all spend our lives moving in and out of categories of ablebodiedness and disability. Knee surgery? Guess what, you’re disabled until that knee heals. Lupus or RA? Your disability caused by joint involvement and fatigue may wax and wane, making a cane necessary sometimes, optional other times, and, on a good day, totally unnecessary. If you’ve ever had to shop for a cane out of necessity, you know why a stylish, properly-proportioned is so important.
Developing useful products for people with disabilities that are also aesthetically pleasing or attractive reduces stigma about disability and makes these products more widely available. We all use “assistive devices” all the time, even if we don’t call them that. The example of audiobooks (in the Buzzfeed article) is a great one. The food processor was also developed to assist people with disabilities and now it’s a kitchen staple. I love my Dragon Dictate software for days when my hands and wrists hurt too much to type on a traditional keyboard.
I think of a company like OXO which started out making products for people whose grip and hand strength had been reduced by arthritis. They used principles of universal design to make their products usable by as many people as possible, regardless of age, strength, or handedness. Now people who don’t consider themselves “disabled” buy their products because the tools are attractive and easy to use, and people with disabilities can go into Bed Bath and Beyond and find a whole wall of attractive, relatively inexpensive “assistive devices.”
“When you are ill or disabled, do not feel that you have failed in some way, do not feel guilty. Do not blame life for treating you unfairly, but do not blame yourself either.” –Eckhart Tolle, The Power of Now (218)
For the past few weeks I’ve been reading bits and pieces of Eckhart Tolle’s The Power of Now. I appreciate the ways in which he brings together anecdotes and parables from various religious and philosophical traditions in order to illustrate his arguments about surrender and presence. I suspect this is why his books have been so popular, and why he received the ringing endorsement of someone like Oprah. For the most part, he also manages to stay away from the sort of woo-woo, new age-y stuff that reaks of pseudoscience.
I will be the first person to agree that pain and suffering are separate but related phenomena, and that the stories we tell ourselves about pain (physical, mental, or emotional) amplify our pain and lead to suffering. I also recognize that one of the only ways to short circuit this process of amplification is to try to be mindfully present at all times. For me, the best way to manage the physical pain of autoimmune disease is by staying fully present with that pain as it is– not the story of how the pain is like or unlike other pain, not the story of how the pain is never going to stop, or is only going to get worse, or how my life would be so much better without it, and definitely not the story of how the pain is the single most defining characteristic of my life. It’s taken me a long time to get to that point, to accept that the things my ego wants (“identify with the pain!” “be a victim!”) work against my chances for finding a lasting sense of peace and contentment.
So why am I left with a bad taste lingering in my mouth?
First, it’s all well and good to stop identifying with pain, but what happens when that pain is caused by circumstances that could be changed, either right now or in order to benefit someone else in the future? I think about the battles those of us involved in patient advocacy fight every day: better access to healthcare and prescription drugs, more research on rare and chronic diseases, appropriate compensation and benefits for doctors who go into unpopular specialties like rheumatology. Individually, we do not have the power to make the systemic changes that would improve the lives of patients. But collectively, we can fight those battles by telling our stories to people who do have the power to make changes: elected officials, scientists, researchers, insurance companies, and clinicians. How do we tell the story of our pain–and yes, suffering–without identifying with it? How do we use the power of our individual and collective narratives without become overwhelmed by them? Where is the self-help book to teach me about that?
More importantly, whether it’s Tolle, or someone like Lynn Grabhorn, many of the teachings that seek to lead people away from suffering fail to take into account the very real physical pain of chronic illness. Despite statements like the quote from Tolle that I open with above, many authors who write about mindfulness and the alleviation of suffering have accepted and re-purposed subtle and not-so-subtle cultural and religious messages about chronic illness in their work. They say that people “attract” illness to themselves; that illness is the natural outcome of negative feelings; that we need to try harder at being more present, more aware, more at peace, and then our illnesses will go away because they’ve taught us the “lesson” they were there to teach us. I am always shocked when I see these messages, sometimes subtle or implicit, sometime overt, mixed in with what is otherwise very helpful advice. Certainly, it’s more likely that someone will get sick with a cold or minor infection when they scrimp on sleep and eat a diet lacking in necessary nutrients (often as a result of “stress”). But that kind of “sick” is very different from cancer or autoimmune or genetic disease. And it tells me that these authors–like many physicians– have never had to deal with a persistent chronic condition, and find it difficult or even frightening to empathize with someone who has. Are we really still retracing the steps of the disproved “Cancer Personality” hypothesis or the “repressed anger” stereotype of the “Rheumatoid Arthritis Personality”?
I guess it just comes down to “take what you need and leave the rest.” I shouldn’t expect people to “get it,” even if they seem otherwise enlightened. In the meantime, if anyone is interested in an excellent book about mindfulness and chronic illness, I highly recommend How to Be Sick by Toni Bernhard.
As I near the one-year anniversary of starting my Kineret injections, I want to take a moment to bask in the glow of getting my inflammatory arthritis into remission. I was one of the lucky people who responds to anakinra almost immediately, with a significant reduction in symptoms (in my case a magical ACR70 level of improvement) within six weeks. My rapid response further cemented my rheumatologist’s hunch that my arthritis is autoinflammatory rather than autoimmine in nature, and closer to Adult Onset Still’s Disease (AOSD) or Tumor necrosis factor receptor-associated periodic syndrome (commonly known as TRAPS) than to seropositive Rheumatoid Arthritis. We also briefly hoped that my success with Kineret meant that all my symptoms had been from AOSD/TRAPS and would resolve with Kineret treatment, but a recent Lupus flare–likely triggered by reducing prednisone and plaquenil–unfortunately suggests otherwise. (That, however, is another story for another time.)
Kineret gave me my hands and feet back. It also helped to control my frequent low-grade fevers and GI symptoms. It has improved my skin rashes. I’ve had fewer secondary infections. I have more energy on a lower dose of prednisone. Compared to how I felt two or three years ago, the change is nothing short of miraculous, and you can see it in my hands:
But Kineret isn’t for the faint of heart. It requires a daily injection. Every single day. And the solution is considered “preservative-free” but it contains sodium citrate– also known as citric acid. This means the injection feels about as good going in as pouring lemon juice in a paper cut. In additional to all the regular scary warnings that come with biologics (risk of infection, malignancies, anemia), there’s also a high chance (about 70%) that you will develop an injection site reaction (ISR) during the first four weeks of treatment. I made it through the first two weeks without incident, so I thought I had escaped the window of opportunity for an ISR. Wrong. Oh, how wrong I was.
When the rash first started to appear in small clusters of red bumps, I though I was having an allergic reaction to something environmental, like laundry detergent. Then, a few days later, the initial clusters became enormous plateaus of raised, angry welts. (Meanwhile the newer injection sites produced the small clusters.) In a few more days, the big welts would harden and darken, like bruises. At this point, they managed to be both painful and itchy simultaneously. It was during this time that I was trying to run a 300-person conference, so I dosed myself with antihistamines at night and periodically applied antihistamine gel during the day and tried so very hard not embarrass myself by scratching my upper thighs in public. As I swelled up and the injectable real estate on my thighs got more and more exclusive, I thanked whatever deities might be listening that I hadn’t tried injecting my stomach.
While all this was going on, I tried to search for pictures of anakinra ISRs online, but nothing useful came up. So for the sake of science, and other autoimmune and inflammatory arthritis patients, this is what Kineret (anakinra) injection site reactions look like. (ISR photos below the cut.)