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.

a woman wearing a mask and face shield against a dark background

 engin akyurt on Unsplash 

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.