Centering Chronic Pain in the Discussions on US Healthcare
Don't let chronic pain patients get lost in these conversations.
Everyone is talking about the violence of the American healthcare system right now. This is a good thing, regardless of anyone's thoughts on Luigi Mangione, a man who suffered from severe chronic pain and is accused of killing the CEO of UnitedHealthcare. There have been many important conversations I’m glad to see happening. I see a lot of talk about people who have died after being denied life-saving healthcare, and these conversations have been powerful and important. But death is not the only form of violence the US healthcare system inflicts. I want to talk about chronic pain.
Sometimes the violence and suffering experienced comes in the form of being denied a medication you could greatly benefit from in order to minimize the debilitating and painful symptoms you experience daily.
Because I know how important personal narratives have been in these conversations, I'll say this: I have dealt with the dehumanizing, hellish experience of my health insurance initially denying my access to a medication I needed for chronic pain. The medication is Lyrica, and the condition is Fibromyalgia. I can't take other drugs approved for it because of the side effects they cause for me. I have tried them. Nothing has ever helped me the way Lyrica does. If I miss a dose, the pain washes over me. I cannot even think clearly. I remember feeling so distraught over the fact that I finally had a prescription to a medication that might give me more pain relief and yet it was out of reach thanks to my insurance company. In the end, I was finally able to appeal the insurance company's denial. I am lucky. Many patients living with chronic pain aren't.
We make a great scapegoat for the Opioid Crisis. Many people believe it's not the policies that are the problem, it's the “drug addicts” who claim to have chronic pain. It's our society's obsession with “treating pain” and relying on prescription meds. It's not poverty and other forms of systemic injustice that led to the epidemic, it's the “crooked doctors and their chronic pain patients.” As a result, we're viewed with suspicion by everyone we come in contact with, in the healthcare system and outside of it. Even worse, patients who may need opioids for their pain levels are denied access to those drugs, and it is standard for many of us to receive non-addictive medications that are expensive and more likely to be subject to “prior authorization,” which in many cases we can appeal, but the process is exhausting on top of the pain we're experiencing. I did not know this was why I had to fight to get my Lyrica prescription until I found an article, titled “Amid opioid crisis, insurers restrict pricey, less addictive painkillers,” about how often this happens to chronic pain patients (guess what health insurance company was mentioned in this article). In addition, patients on other medications for pain, such as benzodiazepines, may be accused of being “addicted” to pain meds as well. If you want an idea of how widespread this problem is, and how harmful it is to patients, there have been some patient-led protests called “Don't Punish Pain Rallies.” Simply being a patient who needs pain relief for chronic conditions is enough to make people suspicious of you, and many patients have had enough.
Patients with chronic pain have limited treatment options. Assuming we even have health insurance, we end up spending much more time than we'd like to inside hospitals, interacting with doctors who question us, send us for lab work and various procedures, and diagnose us if we're lucky. They put us on medications that aren't guaranteed to work for us, have various side effects, and our health insurance may not even approve. If we don't have health insurance, we experience the pain without treatments or a diagnosis, which often makes the people in our lives even less likely to take our pain seriously because our condition has not been validated through a diagnosis. I had trouble accessing college accommodations when I was struggling with an undiagnosed condition. For those of us who go down the “alternative medicine” route, which is many of us at some point due to our desperation after experiencing the horrors and frustrations of the United States Healthcare system, we often become the victims of shady alternative health practitioners, wellness influencers, and wellness companies who take advantage of our suffering. Sometimes the harm is financial, other times it is physical or even deadly. Neither path, alternative medicine or mainstream medicine, fully serves our needs under our oppressive capitalist system.
There is a misconception that many people who aren't chronically ill have that when you go to the doctor, you'll automatically get a diagnosis and receive care. One major barrier many of us face when trying to receive a diagnosis and get treated is medical gaslighting. Medical gaslighting is a term patients use to describe the experience of doctors trying to convince us that we aren't really sick. Medical gaslighting can also come in the form of medical racism, medical misogyny, or fat shaming (“you just need to lose weight”). We may face pressure to talk to a therapist about our physical health symptoms because the doctor, baffled by our test results, insists we're just anxious or depressed. This medical gaslighting can be an aspect of medical trauma, a term patients use to describe traumatic experiences we have when seeking medical care. Because we have to seek medical care so often, we often talk about experiencing “medical burnout,” a feeling of burnout that occurs because managing chronic illness is exhausting. Medical gaslighting, oppression in the healthcare system, medical trauma, and medical burnout significantly impact the well-being of patients with chronic pain. Despite this, we have limited resources to address this on a systemic level, only individual “solutions” (such as finding another provider or keeping extensive notes) that won't work for all of us. The doctors who harm us face very few consequences for their actions.
Economically, living with an illness is expensive but we are often unable to work without significant challenges, if we're able to even work at all. The price of co-pays for appointments and medicine, the price of treatments and procedures if we're without insurance or if they're not covered entirely, the price of additional things we might pay for like OTC meds, heating pads, and mobility aids. Some people might receive massage therapy or other forms of therapy that aren't covered by insurance. Many people with chronic pain don't receive adequate accommodations at work, because while many may think lack of accommodations ended with the ADA, that isn't the reality. Our needs are often considered “unreasonable.” We face discrimination from employers for asking for additional breaks to rest, or the ability to sit down while working. Yes, we could fight disability discrimination, but we won't all have the energy or resources to do that and there isn't a guarantee we will win. Whether due to lack of accommodations or our symptoms themselves, many of us are unable to work at all. This means we'll face judgement from people who think those who don't work are inherently “lazy” and less valuable than those who do, and we'll be at the mercy of the inadequate social security system, if we're approved for benefits at all (and many people are denied multiple times).
Socially, there are multiple issues we experience. People don't understand chronic pain unless they've experienced it themselves. They don't believe us when we say we can't do certain things, they assume we just aren't “trying hard enough.” Our friends, family, and partners don't understand how we can “look okay” and yet struggle with so many debilitating symptoms. They don't understand how we're relatively symptom-free one day and unable to get out of bed the next. And too often, they think we're exaggerating or they don't believe us at all. Having friends and family believe we are faking for attention or other personal gain is one of the most painful experiences that too many of us go through. Our attempts to explain our experiences to others lead to judgments of our character. Our struggles with interpersonal relationships lead to profound isolation. In addition to the lack of understanding and ableism from the people in our lives, it's a common experience for people with chronic pain and chronic illness to be abandoned by certain people in their lives altogether because they can no longer do the activities they used to.
The isolation we experience may lead to depression, anxiety, and other forms of mental distress. But for patients with chronic pain, mental healthcare is complicated. We worry about bringing up our depression or anxiety because somebody might try to convince us that our chronic pain and chronic illness symptoms are caused by the state of our mental health. They'll say therapy or antidepressants will make our symptoms go away. I have heard many patients with chronic illnesses say they're afraid to bring up mental health issues with their doctor because it might impact the treatment they receive and lead to medical gaslighting. This is true especially when you have yet to receive a clear diagnosis, but patients with conditions like ME/CFS and Long COVID are also often told their symptoms are due to their mental distress and that the “cure” is cognitive behavioral therapy or “mindfulness.” When these conditions are misunderstood this way, patients are not only being deprived of treatment that might actually help, they're being actively subjected to harmful treatment by people who have no understanding of their condition. Patients with chronic pain may also have fears around receiving therapy because their therapist might hold biases around pain medication and try to convince them that they're “addicted.” We need therapists and mental health professionals who have an understanding of chronic pain and chronic illness, but these can be difficult to find. We also may struggle to afford therapy due to the out-of-pocket expenses on top of costs for our chronic illness treatment, or lack of health insurance. Free peer support groups can be a great alternative, but it can be difficult to find one in your area (thankfully, some meet virtually as well).
I can't talk about chronic pain or chronic illness without bringing up COVID. Not all patients with chronic illness are immunocompromised or view themselves as “high risk.” However, many of us are - and we have had to watch the world betray our community these last five years. Because I live in the US, I’ll speak to the US experience specifically here. In a horrifying embrace of eugenics, we were told the deaths of people like us mattered less because they had “underlying health conditions,” so their deaths were “inevitable.” Fauci said we would fall by the wayside and Rochelle Walensky said it was “encouraging” that those who were dying had multiple health conditions (just like many of us do). People gleefully took off their masks, never to wear them again, not even when cases were high. The US government lied about COVID no longer being something we should worry about and failed to deliver the truth about Long COVID or other long-term health risks. People believed them just because they weren't the Trump administration and because they thought they won the “health lottery” and could never be harmed by a virus. Long COVID and ME/CFS patients have been begging for any help they can get, and have mostly been ignored. Hospitals removed COVID mitigations such as masks, making hospitals, the places we rely on for care, even less safe. Many patients have been infected with viruses such as COVID during appointments and hospital stays. Immunocompromised people are told it's too much for others to wear masks, and they should just stay home if they're that worried, as if we are undeserving of public spaces. On top of it all, masks are being criminalized in multiple states, and even leftists and organizations focused on “collective liberation” and “social justice” have been largely silent about this. The Republicans won the COVID culture wars because liberals and leftists caved and internalized their ideology and disinformation. This is yet another way people with chronic illnesses have been abandoned and betrayed by society, and it should not be left out of conservations about how we're treated in the US.
Health insurance companies are one obstacle for people living with chronic pain, but they are a big one. These companies should not be allowed to dictate the healthcare access of any person, whether the care is routine, emergency, or for acute or chronic illness. Their power over the American people is not limited to patients with chronic illness, it extends to every American who isn't wealthy, which is the majority of us. Yet I hope in these conversations, we center people with chronic pain, chronic illness, and terminal illness, as well as other vulnerable populations. People with chronic pain, chronic illness, and terminal illness require more medical care than the rest of the population - and therefore are denied essential and life-saving care more often by these corrupt health insurance companies. We should expand these conversations to our healthcare in general, as marginalized people in the US experience worse healthcare outcomes through medical racism, medical misogyny, eugenics, classism, and homophobia/transphobia. None of these are new, and they have harmed and killed far too many patients.
For too long the American people have accepted the corruption of our healthcare system as inevitable, as if we can't do anything about it. Aside from the “Medicare for all” movement that has been talked about less in recent years, despite a global pandemic that has only made it even more necessary, public discussions about healthcare in our country have only happened sporadically. Beginning in 2019, I started seeing many memes about teeth being “luxury bones” because they aren't covered under most health insurance plans. These memes demonstrate some of the frustrations and grievances we all share over the state of for-profit healthcare. This month, I have seen more serious conversations about healthcare in this country, and I hope they continue so we can work towards changing this system completely. We can't let people distract us by asking us to condemn violence, we can't let them convince us things will never change and that this is the way it has to be. I have also never seen more conversations about chronic pain specifically happening so publicly. I ask that people without chronic pain listen to these stories from chronic pain patients, interrogate any misconceptions you might have, and learn about what you can do to help us. Don't let our personal narratives about our experiences get lost in these important conversations happening.
Finally, we have to remember it is more than just health insurance that's the problem. There are so many other health-related causes, nationally and internationally as well as within individual communities, to get involved in. Disability justice, Long COVID, clean air clubs and mask blocs, reproductive freedom, trans healthcare, healthcare organizations supporting an end to the genocides in Palestine, Congo, and Sudan, patient advocacy organizations, organizations addressing racial inequality in healthcare, and so on. We need to end all forms of healthcare inequality, medical racism and gaslighting, so we can improve the quality of healthcare for everyone. Healthcare shouldn't be a privilege, and barriers such as lack of health insurance or greedy insurance companies shouldn't exist. If nothing else, I hope this moment reminds us all that we can't let the status quo continue. We need change - our lives depend on it.
Ornstein, C., & Thomas , K. (2017, September 18). Amid opioid crisis, insurers restrict pricey, less addictive painkillers. https://www.ktoo.org/2017/09/17/amid-opioid-crisis-insurers-restrict-pricey-less-addictive-painkillers/