We must reckon with our ableism if we want healthcare to work for people
People who had COVID-19 may need long-term care — the US healthcare system isn't ready
Content warning: This article discusses ableism and gaslighting.
Two years ago, my doctor told me to stop calling. I fell silent, quickly reverting back to the 10-year-old who was taught to disbelieve herself. I explained that the headaches and episodes of vision loss were persisting, that she had sent me to a specialist who found some irregularities but no cause. They had recommended returning to my doctor. She gave me an insincere smile, “I have other patients who need help, too.”
Being dismissed by doctors isn't a rare experience for chronically ill patients. Only a month later, I had a consultation with a pain clinic about botox for migraines, a treatment recommended to me by other migraineurs. But I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for.
Fibromyalgia is a chronic disorder (likely) of the nervous system that causes widespread pain, fatigue, and cognitive disturbances. People with fibromyalgia may also experience a long list of other symptoms that can be so severe it prevents them from going to school or working. It may be genetic, since it can run in families, or the onset of symptoms can be triggered by stress, emotional or physical trauma, or even an acute viral infection. Yes, a viral infection can cause chronic, disabling conditions.
People with COVID-19 have an increased incidence of stroke, insomnia, and nerve and muscle disorders. Some patients develop auto-antibodies, increasing their risk of developing an autoimmune disorder. Researchers are studying the relationship between COVID-19 and multiple secondary conditions, like Guillain-Barrė Syndrome and parkinsonism. But long-term health consequences of the pandemic aren’t limited to COVID-19 patients. Healthcare workers are developing post- traumatic stress, the global pandemic is negatively impacting people’s mental health, and people are postponing preventative and acute care. To put it simply, the COVID-19 pandemic is disabling people and the US healthcare system is not prepared to manage their care.
“Is fibromyalgia real?” If you type that phrase into Google you will get thousands of results. As the body of research into fibromyalgia continues to grow, the results are mostly researchers and hospitals saying yes, of course fibromyalgia is real. But this Google search represents a common sentiment held by the public and by healthcare professionals. This idea, that the illness isn't real or that patients are faking their symptoms, wasn’t just born from fibromyalgia’s complicated history, it reflects the deep-seated ableism that pervades healthcare.
The history behind COVID-19 isn’t so complicated. We know that it is a virus, we know what the most common symptoms are, and we have a test that can diagnose it. But the gaps in long-term care and research are already evident. A group of patients who have long COVID, symptoms of infection lasting more than 28 days, outlined the barriers to symptom management in a letter published in Pain Reports. The first demand that they make is something that I can strongly relate to: They need people, both healthcare workers and their own families, to acknowledge that long COVID is an illness.
There is plenty of research and anecdotal evidence of long COVID. So why aren’t these people believed? The answer is ableism and our propensity to dismiss the experiences of people with long-term symptoms. This disbelief is affecting symptom management and disability benefits claims. But I fear that long COVID patients and those that develop secondary conditions will learn another truth, that disbelief is traumatic.
I had my first sick visit for muscular pain when I was ten years old. I wasn't diagnosed with fibromyalgia until I was 20 and had such severe symptoms that I couldn't leave my bed. After receiving my diagnosis from the rheumatologist, I eagerly had a follow-up visit with my pediatrician. See, I thought as I shared the news, it wasn't all in my head. But I quickly fell silent as my doctor explained that this an adult problem, I had to find a new doctor.
I'm 26 now, I've picked up a few other diagnoses along the way but I still have not found a doctor who will help me manage my fibromyalgia. I still have not found a therapist who can help me unravel the trauma caused by gaslighting and years of unmanaged pain.
Ableism is deadly, and there is so much more to say about how it corrupts healthcare. But I hope you can see that the dismissal of disabled voices is something that we can change. This may be as simple as believing your friend when they say they are in pain or it could mean changing the way that we do research.
In conservation biology, researchers produce data that doesn't reach the people who can use it. Similarly in medicine, researchers lack an understanding of what disabled people actually need to manage our care. The authors of the long COVID letter have a suggestion for solving this problem — patient-led research.
Long COVID patients have formed a group called the Patient-Led Research Collaborative and have since conducted two surveys with the goal of characterizing long COVID symptoms. The idea of patient-led research isn’t new, but it also hasn’t taken off yet. One criticism of patient-led research is that patients might not have advanced education in the appropriate field and may lack the scientific aptitude to conduct research. Well, the Patient-Led Research Collaborative puts it quite nicely, “It is clear, however, that as patients, we are intimately aware of what we are experiencing.”
Of course, ableism is just one of many factors that create a poor quality of care. Saying racism and implicit bias exacerbate gaps in care would be an understatement. Black women have a higher mortality rate from pregnancy-related complications than white women and they are underrepresented in clinical trials that require consent. LGBTQ+ people are discriminated against in healthcare, with Arkansas lawmakers passing a bill this April that bans doctors from providing gender-affirming surgery to trans youth. But the US healthcare system is also not optimized for chronic care. For example, the amount of time physicians have for patient care and literature review is extremely limited due to the amount of time they must spend on paperwork, and there is a lack of healthcare access in rural areas.
The US healthcare system cannot provide appropriate care to people with chronic conditions, and the amount of people with chronic conditions is increasing because of COVID-19. The thing is, disabled people know this and we’ve been saying it all year. We must reckon with our ableism if we want healthcare to work for people, if we want it to work into the future. Step back, let disabled people lead, or at the very least, listen.
Genetics and Epidemiology
Johns Hopkins University
Neuroscience
Vanderbilt University
I appreciate your thoughtful perspective on this issue. I think this article may have benefited from a discussion of how financial incentives shape the care and attention paid to people with chronic illnesses. The lack of treatment is particularly concerning becase pharmaceutical developers are actually incentivized to produce drugs for chronic diseases and particularly for rare diseases based on orphan drug designation. How, or if, could the existing market incentives be realigned to deliver treatment for patients with chronic illness?
Olivia Bernard responds:
To clarify, there isn’t a lack of treatment options for many of the conditions I mentioned. There is a refusal to provide treatment. For example, chronic pain patients are refused effective treatments because they are wrongly labeled as drug seekers or resisting less-effective forms of treatment (both ableist ideas). While a discussion on financial incentives could prove fruitful, it just isn’t what disabled people are asking for at this moment. In this piece, I think it could’ve been a distraction from the impact ableist interactions have on patients day-to-day. If we, as a society, can reckon with our ableism then I think that conversation would be next.
Soren Emerson responds:
Totally agree on the need to listen to patients and for society to reckon with ableism! My mom suffered from recurring breast and ovarian cancer when I was growing up (her illness lasted about eight years). Overtime she became progressively more ill and in pain and unable to move. Toward the end she would tell her doctors that she was in pain in her gut. They did not listen effectively and refused to follow up on my mom’s concerns. It turned out that her inability to move caused the muscles in her digestive system and abdominal wall to atrophy. She eventually died from starvation rather than cancer over a period of a few months. I understand that the first step to addressing ableism should be for patients to be listened to, but since our medical system is a capitalistic, and increasingly a corporatist, system how it treats patients is often driven by financial incentives. I should have clarified in my earlier comment, but what I was getting at is that the existing financial incentives focus on dramatic intervention (for a recent example, 56,000 dollar Alzheimer’s drugs that likely are ineffective) rather than holistic patient care, which includes caring for patients by listening to them. Once again, I really appreciated your perspective and I am glad that you shared it!
Olivia Bernard responds:
I’m very sorry to hear about your mother. I’m struggling with your comments because they are a bit ironic. In particular…
I understand that the first step to addressing ableism should be for patients to be listened to, but since our medical system is a capitalistic, and increasingly a corporatist, system how it treats patients is often driven by financial incentives.
There is a lot to be said about the inequities in healthcare. During the pandemic, healthcare workers and scientists have come to this realization, some have been vocal, too. The reaction from myself, and much of the disabled community, has been “uh ya, disabled people have been saying this for years” and/or “it doesn’t matter if we don’t deal with ableism.” So the irony here is, I feel a bit dismissed by your comment and it decenters ableism. I’m sure this wasn’t your intention, but I’m also sure that healthcare workers don’t mean to harm their patients and that researchers think their studies improve patient care. This is why we must center ableism and disabled voices in these conversations.
Biomedical Sciences
Baylor College of Medicine
I’m so glad to see this written and sparking conversations, as it is such an important piece! The pandemic has really furthered the divides within the US healthcare system that already existed and I do agree that the system is not ready to handle all of this.
I truly wish healthcare professionals were trained on how to handle disability with patients and also when it comes to their disabled colleagues who may not feel comfortable even disclosing their disability. Ableism, especially when combined with racism and other biases, within the healthcare field does come down to a life-or-death situation, which impacts so many patients and their quality of life. I applaud you for sharing your personal story with us regarding your diagnoses and hope that the US healthcare system can one day meet your needs along with those of every other disabled person.
Patient-led research will help the healthcare field change as disabled people know their bodies and experiences best. Only by the medical system acknowledging and ridding itself of ableism can patients and healthcare professionals work together to create a better and more inclusive system for all involved.
Mathematics
Thank you Olivia for this important and powerful piece. As I was reading it, I was reminded of the concept of testimonial injustice from philosophy and ethics. Testimonial injustice occurs when a hearer unfairly judges a speaker to have less credibility because of the hearer’s prejudices. It seems that disabled people experience testimonial injustice as the ableism of healthcare workers leads them to unfairly judge disabled people to be less credible and so they dismiss disabled people’s experiences and ultimately refuse to provide them with the treatment that they need.
I hope that articles like yours will make healthcare workers, and everyone else too, pay attention to and really work towards correcting our ableist prejudices and follow your advice to “Step back, let disabled people lead, or at the very least, listen”.
Neuroscience
University of Minnesota
As someone in who works in academic research, ableism also prevents disabled people from going into research and healthcare fields. The article mentions that one argument against patient-led research is a lack of expertise. To me, the argument shows that there’s a perceived separation between disabled people and researchers. However, this doesn’t have to be true. There are researchers with chronic illnesses or disabilities, and there could be more if institutions made the effort to make those careers more accessible. One aspect of long COVID is that many of those affected are in healthcare fields. I’m hopeful that their lived experiences could translate into more compassion and advocacy for other chronic illnesses as well. That said, larger changes are needed in both healthcare and research to center chronic diseases and work with patients rather than dismissing them.
Science Journalism
I also really appreciated the article, and the representation of disabled people in an ableist world. Amy, I think your comment hits the nail on the head, that ableism - and the percieved lack of expertise among disabled people - also prevents disabled people from going into research and healthcare. As a former researcher and someone with chronic invisible disabilities and cognitive disabilities, I couldn’t agree more. I’m not a researcher any more because of how I was treated in academia, and the cost it was having on my soul to see my people talked about and studied like we were zoo animals, particularly those of us who live at the intersections of other systems of oppression like racism, queerpbohia etc. At my last research job - ironically at a disability policy institute - I was fired three weeks after I asked for disability accommodations, and after 2 years of subtle and not so subtle ableism and questioning of whether I should be there. The thing was, my research was better than the research produced by my non-disabled colleagues. My other disabled colleagues also produced much better research. We understood disabled people’s concerns and challenges, and we understood how to do research with and about and for people considered disposable. We understood the richness of disability and the disability community and how we are leaders and innovators in creating a better, more just, more inclusive, more interdependent society. I think the perceived lack of expertise goes so deep, in how we as a society discount the expertise of anyone but abled white cishet men in possession of (generally stolen) wealth. I know that my disabled colleagues and I have more expertise than my former PI, who is not disabled and doesn't live at many of the other intersections we live at. I fully agree we need to make research careers more accessible, for the benefit of everyone, not just disabled people who will have more access to research careers, but for the benefit of society who will have more access to disabled researchers. Disability inclusion benefits everyone, going back to Olivia's original point that disabled people have been asking to be able to work from home since forever, and when the pandemic hit, suddenly everyone discovered the many benefits of allowing people to work from home and it benefitted everyone and society at large.
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Great piece, Olivia! At the start of the pandemic, it felt that accommodations and systemic changes were being quickly made to cater to the needs of most people working from home. As things “get back to normal,” ableism runs rife as we see these accommodations undone at the expense of disabled people’s ability to participate and engage with virtual events. I see healthcare’s rampant ableism as a reflection of how our society generally treats disabled people, instead of seeing “ability” as a temporary state that can change at the whim of even a viral infection, many assign it a moral high ground.
Actively prioritizing disabled people’s voices in inclusion and equity agendas, where disability’s effects are compounded when intersected with race, class, gender, etc., should be an important priority not only in healthcare, but in schools, in jobs, and in broader society.