'Systemic Barriers in Healthcare' a blog post by Lumie Mae

By Lumie Mae

A black-and-white hand-drawn line-art illustration of a young feminine person wearing a skirt and blouse sitting in a manual wheelchair. They have red cheeks, long hair, a grey-blue cloud behind them, and red lines around their body signifying pain.

The Healthcare System is not Designed for, nor Equipped to Accommodate, the Needs of the Most Impacted Individuals.

The result? Medically complex, chronically ill, disabled individuals and patients with rare conditions are met with a dangerous lack of understanding regarding the management of their care, and they have significant difficulty accessing specialists who are informed enough to handle the complexity of their cases. In consequence, patients are given harmful and dangerous medical advice, and they frequently face medical gaslighting, misdiagnosis, and denial of medically necessary intervention.

Medical gaslighting, minimizing, and denial of necessary treatments harm those with rare conditions, severe disabilities, women, racially marginalized individuals, and people who are marginalized at many intersections more frequently, as well as more severely. This issue is not the result of just a few bad doctors. It’s a structural problem of medical institutions that exists on a systemic level.

For example, women have been excluded throughout history from science and medicine. Women’s bodies have not been studied as much as men’s bodies, resulting in a deficit in advancement in women’s health compared to men’s. Research and development of treatments for conditions which more commonly impact women, such as endometriosis and myalgic encephalomyelitis, have little funding compared to objectively less serious men’s health issues, like male pattern baldness and erectile dysfunction. Disabling, painful, and life-limiting conditions that primarily impact women are often minimized, or claimed to be purely psychological. Patriarchy is enmeshed within the institution of healthcare.

There are also deeply integrated racial biases in the medical system. People that are racially marginalized have historically also been excluded from science and medicine, and have been denied their dignity and agency to consent to treatments or studies. Racialized people have been subject to grave injustices from medical institutions. They are more likely than their white counterparts to be silenced, gaslit, have their concerns dismissed or minimised, neglected, denied pain control, and otherwise harmed in medical settings. They have greater difficulty accessing care and diagnosis due to systemic barriers and medical racism, even though disability rates are higher in these populations.

Chronically ill patients also often experience harm in medical settings and a lack of competency of those handling their care, especially those who are medically complex, have a rare or misunderstood condition, and those who are disabled long term by the symptoms of their condition. The medical system is not designed to handle the complexity of many disabled patients. Healthcare workers lack education on many chronic, rare, or complex conditions. This systemic deficit causes harm in the form of dangerous medical advice being offered to patients, disbelief, dismissal of concerns, or denial of medically necessary care. Ableism can show up within provider-patient interpersonal relationships as a reflection of ableism built into healthcare structurally. Essential intervention and symptom management can be inaccessible to chronically ill and disabled patients financially, physically, due to past trauma surrounding medical settings, and due to medical gaslighting, dismissal of concerns, and denial of care.

It is no surprise that for-profit healthcare, as well as underfunded public systems that coexist alongside private healthcare, can uphold eugenicist ideals via 'medical Darwinism' (1) or systemic barriers that have been empowered to decide who gets easy access to medical care and who doesn’t.

(1) Darwinian medicine is the field of study that applies the principles of evolutionary biology to problems in medicine and public health.

Sharing my Story

I was a patient who went undiagnosed with multiple debilitating, severely painful and rare vascular compression syndromes for four years. As a result, I did not receive surgical intervention or appropriate symptom management for those years.

I was denied an intervention for my chronic pain for over a year when it first became severe. Having constant, unmanaged and uncontrolled pain caused immense harm to my body. This included life-threatening MCAS-induced anaphylaxis, which was triggered by the pain. My experience of being denied what was ultimately life-saving care for so long reflects the lack of competence within the healthcare system directly. My medical team was not educated enough about what I had to handle my needs, so they did nothing.

While what I went through was harrowing, I want to acknowledge that it could have been worse and taken even longer if I wasn’t white, didn’t have an advocate in the room with me at appointments, and wasn’t able to financially access and travel for better care.

I have since received surgical treatment for both compression syndromes, including a renal autotransplant, which was a surgery in which I had to move my left kidney to the right side. I now have two right kidneys. I’m still recovering from the surgery, but thankfully I am living with significantly less pain now.

I’m grateful for finally undergoing the medical interventions I required, and for the healthcare system for saving and restoring my life in all the ways that it did. Simultaneously, I believe a lot of change needs to occur within the healthcare system so that marginalized groups of patients do not have to navigate countless barriers, healthcare professionals who don’t believe them, and a complete uphill battle when trying to access care. As per the pillars of disability justice, when the most impacted are centered, everyone can benefit. Accessibility changes lives everywhere.