Purpose

Why the social dimension of clinical care matters so much

Clinical spaces can create intimate moments between the clinician and the patient. There are many ways in which this is created by space. The clinician is standing up and looking down. The patient is sitting down and looking up. The clinician is clothed and protected by a white coat. The patient is often disrobed and chilled by a cold clinical room. The clinician holds a chart and the patient comes with a list of questions. The clinician holds a prescription pad and the patient comes with pains or ill-health, seeking relief. In many ways, this creates extraordinary vulnerability for patients, even when many come armed with education, extensive research on their symptoms, and a partner to help in their advocacy.

It is within these spaces that so many patients with contested illness feel their dignity stripped away because they don’t feel heard, understood, or believed. The social dynamics cultivated in clinical spaces are co-constructed between the clinician and the patient. However, in most ways, the physician is in control and poorly trained in diagnosing complex chronic conditions. This is why clinicians are often more likely to say, “it’s all in your head!”, “you need to eat less!”, “you need to exercise more!” or “you are not compliant with the medications I prescribed.”

The tendency of medical providers to deflect the real pain and complex syndromes that drive these conditions is a major failure of training and clinical practice. This failure is somewhat rooted in the clinical space’s failure to take seriously the complex social, structural, and intrapersonal dynamics underlying chronic health conditions. No patient enters a clinical space with one problem and pain in the mind, body, and social relations are always entangling. In part, the inability to digest and respond to these complexities are amplified by the time constraints and bottom lines that make it nearly impossible for many clinicians to really listen to their patients like they would like to. Even those with the best intentions were rarely trained to listen for, understand, or diagnose ME/CFS and other contested conditions like Chronic Lyme and now Long Covid. 

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Autoimmune conditions are more common in women and a type of condition that is often dismissed or ignored. I spoke to a colleague who’s lived with Lupus more than half her life. The immune system in healthy people protects the body from infection and disease; however, in people with Lupus, the immune system attacks its own tissues, causing inflammation and in some cases permanent tissue damage. This attack is systemic from the skin, joints, heart and lungs to the kidneys, blood cells, and brain.  In mid-life, my colleague, who I’ll call Mercedes, reflected on living with Lupus through the emergence of Long Covid.

“I was surprised by how quickly people started to catch on to Long Covid—a result of inflammation and vascular issues. It’s really not a respiratory but rather a vascular condition. In many ways, I connect myself because systemic problems are always the scariest, the most worrisome, because really at any point you could be affected in any part of your body. I think people started to understand—people go back and forth—suddenly people understood what it was like to be a shut in, scared of being sick, and then all of a sudden it passes. But people do this every cycle of a pandemic. People just kind of forget.”

Mercedes went on to explain how difficult it can be to even get a test to identify that one has Lupus; since her mother had Lupus, it was already something she was very well acquainted with and she could advocate for attention, diagnostic tests, and care. She explained, “Autoimmune diseases and lupus in particular, people do not believe. I just happen to have a family who was very vocal. We already experienced lupus in the family and we understood what diagnostic tests I needed to take—these kinds of things.”

Despite the depth of knowledge Mercedes had because of having Lupus in her family, many people are not diagnosed until suffering with Lupus for years. She went on: “I know people who were not diagnosed until their late fifties but had it for 30 years. Women generally dismiss them—women and women of color in particular. Being a patient, having friends with Lupus and people in their families with Lupus, I noticed it was generally black and brown people who were diagnosed later or had more symptoms. I believe this is because of racism—we know this—the structural problems that exist. Our socioeconomic status helped a lot – we are very educated and have had healthcare my entire life here in the U.S.   I think these things really matter.”

Mercedes also explained how crucial the systemic limitations are for diagnosis and legitimating her illness: “It’s not just people believing you but doctors who have five minutes to determine, oh no it’s just a headache. In fact, they need to do the diagnostic tests and take vials and vials and vials of blood that is taken every six months. It’s not just one, two. It’s a big test and a more common thing than it’s known to be.”

When I asked her how clinicians navigated her Lupus in diagnosis and treatment, Mercedes explained; “I think comorbidities are a big thing. I think my doctors believe I have fibromyalgia. But there is one diagnostic test and a chart of your tender spots. And my doctor gave me a leaflet on tai chi. A study from fifteen years ago that suggested it might help. They just know so little. You can start off with something else and other things get in the way. The Lupus itself, it’s speculated it may have been a virus. Ulcers and things are viruses that have evolved and caused or activated something in the body that created this immune explosion.”

As long as medicine has existed, women-presenting people have been dismissed, pathologized, and stigmatized for having different responses to trauma, infections, bacteria (and other invaders) than those who are typically studied. Mercedes told me, “I was going to bring up, not only about Lupus, but I noticed with people with chronic illness over time. Their illnesses are seen with a lot of suspicion—diabetes, even. There is a lot of concern. I try not to eat too much sugar as well—or salt. That was always a cause of people feeling rejected, or they felt suspicious of, or insulted.” These dismissals have been central to my research with women around the world, and in my work with Mexican immigrant women in Chicago in particular.

In the conclusion to my first book, Syndemic Suffering, I told the story of Teresa, who went to the doctor with four problems (and all of them were social). I spent several years working in this public hospital clinic and observed hundreds of patient-provider interactions. Mostly I served as a translator for women who were scheduled to see non-Spanish speaking clinicians (which was absolutely outrageous because in this clinic there were several Spanish-speaking physicians). I was struck deeply by the common response women said to me after the interaction: The doctor didn’t even touch me. Instead, the overworked resident or attending was frantically entering notes into the computer to make sure their chart was updated for Medicaid reimbursement and their medications were properly entered for the hospital pharmacy. In so many clinical engagements—in private and public clinics around the country—both the providers and patients are stressed and sometimes disappointed by their interaction because there was too little time to connect on a human level.

Teresa’s story was not unique to many of the concerns revealed among the women I interviewed in Chicago. When Teresa expressed social distress that was related to her diabetes, the doctor prescribed her Prozac and sent her away. I include an excerpt here:

“Teresa sat alone in the waiting room of the GMC as she awaited a routine diabetes appointment, engrossed in the newest Spanish-language issue of People. Teresa was a fifty-one-year-old mother of three who emigrated from a small town in Mexico. As the eldest of six children, Teresa attended limited schooling and spent much of her childhood raising her siblings. At sixteen Teresa left her mother and siblings in Mexico to join her father in Chicago. Two years later she married a Mexican immigrant she met in Chicago who was, like her, disinterested in childbearing. After spending much of her childhood caring for children, Teresa was seeking independence. Nevertheless, within months she was pregnant. Teresa said that for a woman who never anticipated having a child of her own, bearing three children in three years was difficult. At last her third child was a boy, and her husband was satisfied. These children are at the center of her life story.”

“Teresa’s story is a somewhat typical case. When she arrived to Chicago thirty-six years ago, Teresa longed for her mother in Mexico and felt that her social and emotional life was at the juncture of Mexico and Chicago. For many years Teresa endured alcoholism and the resultant verbal abuse and emotional manipulation from her husband. She attributed the abuse to her husband’s genuine feelings of insecurity due to the fact that she was a more effective wage earner, working as a payroll supervisor for a center for the elderly. Scholars link such feelings with modernity and the shifting balance of gender and power within Mexican marriages (Hirsch 2003a). At the same time, the wellbeing of her children and grandchildren had come to consume Teresa’s everyday life. Importantly, much of her narrative and life story at large revolved around ongoing family discord and fear for her children’s safety. Teresa was particularly fearful that her children were participating in gangs and using drugs.”

“Teresa was a very confident, forthright woman who did not report any severely traumatic experiences or PTSD. At the time of the interview, Teresa reported minimal depression but stated that she had experienced depression in the past. She associated much of her emotion with family problems, and many of these concerns were other people’s tribulations that she took on as her own. Indeed, she felt the suffering of others quite deeply. For example, as many Mexicans do (Poss and Jezewski 2002), Teresa linked her diabetes onset with a frightful experience (susto) associated with the discovery that her brother’s child was not his own, and that his wife had been unfaithful for many years. This family discovery, and the ongoing support for her brother, continued to be a major stress in her life. In this way, Teresa’s family’s problems were at the center of her life and must be understood to be integral to her mental health and diabetes self-care. Interestingly, despite her relatively stable mental health, Teresa’s diabetes was poorly controlled (HbA1c:9.4).”

“Teresa explained, “Last time I came to Cook County I brought with me four problems.” She sat relaxed against the back of her chair, with one hand on the table, and the other in her purse sitting in the chair next to her. She continued:

“I felt very bad. One [problem was] because my son’s wife left him in September for Mexico because their son was using drugs and was in gangs. The other problem was with the other son, that his wife went to Mexico with their children […] Later there were other problems with my brother-in-law, because his wife had children with another man […] Then he came to my house, and talked about all of those problems, the whole history. And the fourth problem was with my daughter’s boyfriend. I went to ask the guy if he was going to stay with her and he said, “whatever she decides.” This was the fourth thing that happened when I arrived here in pain, with my sugar so high. I was feeling really bad and said to [my primary care doctor] that I wanted to kill that fourth person [the daughter’s boyfriend].

“They brought me to the psychiatrist. They brought me a doctor to talk with, and then the doctor asks me, “So what happened?” I spoke with him about my problems. He said, “You don’t have any problems.” Then he prescribed me Prozac—the pill. For three months.

“[The medication] helped me. But I went on speaking with God and do you know what God told me? I am not going to depend on a drug to feel better. I am going to go on without a drug and until now I have not had to return to the medicines. I have heard that they are very addictive and I didn’t take them for more than three months. But in my mind I began to think that they weren’t my problems, that everyone has their own problems. That this is what I am trying to understand within the Mexican culture. That this is what you look at in our family, taking on too many other people’s problems. For this I said that emotionally diabetes forms as part of our life.”

The end of this story emphasizes how central relationships are to health. That health problems are not individual problems but rather they are deeply interpersonal—our health is woven into the lives and well-being of others. I spoke with Mercedes about the role of relationships in her health and she said the idea of “purpose” has been her shield. It could be a social relationship, family, child, or pet. It could be the belief that she can be successful even when the conditions in which you work/life/move can be stressful or unjust.

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Mercedes has done incredibly well managing her Lupus and is in remission. She explains, “I’ve had a very aggressive individualized approach—I’ve done everything I can to stay with my group at TopHopsital—I’m always switching health insurance. I’m making sure my health providers are in network – because they understand Mercedes’s Lupus.”

She went on to explain: “Individualized medicine has a lot to do with the diagnostic. One patient versus another doesn’t have the kidneys involved—one has nephritis and another one doesn’t. The fact that they’re keeping an eye on me for each problem that has bothered me. I have a kidney doctor that focuses on Lupus – I have all these different specialists that see different parts of me. And that’s the problem with medicine—it’s so individualized that they don’t see the forest through the trees. They’re focused on the kidneys, for example. All together is more useful. What I mean by individualized lupus is more about doctors than anything else. I’ve had to learn over time how doctors help me stay alive but what I do in my life and my family is to help me live. To be a human being, to live in a world, to enjoy my life properly. All together this is a whole program. I don’t think medicine can necessarily—it wouldn’t have been able to keep me alive just by myself.”

Stories like Mercedes emphasize how very central social dynamics are to living well with chronic illness, particularly when they are auto-immune and systemic. We humans are, after all, deeply social and interdependent, despite what contemporary cultural tales tell us about who we are and how we can go it alone.