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Why Diagnosis Is a Privilege Marginalized People Often Can't Access

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Getting any diagnosis can bring up complicated emotions. For some, it’s a relief to have answers, and it can be validating to understand your symptoms and experiences. It can also bring about a sense of hope if you’re able to find a treatment plan or manage your diagnosis in a way that improves your quality of life. For others, diagnosis can feel like a burden or a sentence to a less fulfilling life. Especially if there is no cure for a particular condition, a diagnosis can bring about feelings of hopelessness and despair. Oftentimes, our diagnoses can feel like they take things away from us and make us feel grief and loss of our prior sense of “normalcy.” For many, a diagnosis can feel like a mix of both, or our feelings about our diagnosis can change.

That being said, getting an accurate and fair diagnosis is a privilege many of us don’t have. There are a number of privileges that enable certain folks to get a diagnosis over others — race, gender, body weight, socio-economic status etc.

For a number of health conditions, diagnostic studies were only focused on certain racial demographics, leading certain races to be more likely to be diagnosed. This led to inherent bias within our diagnostic tools and screens. A medical student wasn’t taught how symptoms may present on Black or darker skin because medical books only showed presentations on white skin. Without this knowledge, doctors could easily miss diagnosing someone with a serious medical condition.

Screens for anxiety and depression don’t build in considerations for people who are more likely to deal with minority or race-based stress. The same screens also don’t account for different cultural contexts and nuances, so the diagnostic tools are built for Western culture and their experiences and presentations of mental illness symptoms without recognizing that people from other cultures will experience different symptoms.

Then there is implicit bias when doctors make diagnoses — and studies have shown that Black people are more likely to be diagnosed with severe mental health conditions, while white people are diagnosed with milder, less stigmatized disorders. However, the opposite can also be observed. For example, two little boys might both have ADHD. It is far more likely that a white boy is diagnosed properly as having ADHD, while a Black boy is more likely to be diagnosed with oppositional defiant disorder, or not diagnosed at all and labeled a “bad kid.”

The same idea can be observed in women or girls with ADHD. Because girls may present ADHD differently than boys, they are less likely to be diagnosed from a young age. I wasn’t diagnosed with ADHD until I was in my mid-20s because I didn’t present in a stereotypical way. ADHD has often been a condition associated with young, white boys so when a person is outside of that demographic, and therefore outside of that “typical” presentation of ADHD, their experiences are overlooked and they are left undiagnosed.

I’ve also noticed how women are often treated differently in medical situations — with their experiences often being undermined as not as severe due to misconceptions that women have a lower pain tolerance. When a woman’s pain is not taken seriously, it can lead to misdiagnosis or no diagnosis at all and become life-threatening. Serena Williams’ childbirth experience also highlighted issues with the medical care Black women receive.

Before a person can get a diagnosis, they also have to consider if they have the financial means to do so. In the USA, assessments and diagnostic testing alone can cost thousands of dollars. While Canada does have free healthcare, mental health assessments are often not covered and are paid for out of pocket. Without the financial means to buy access to a diagnosis, people may continue to live without answers or treatment for their conditions. While there are free options available, the waitlists are often far too long making them inaccessible for most people.

I’ve also experienced fat-phobia when seeking out medical attention. I’ve had experiences at the doctor where I complain about pain or a particular condition and am met with the answer that it’s likely because I’m overweight and it will go away if I lose weight. The conversation stops there, without a proper assessment to rule out any other possibilities. Being overweight is not a catch-all medical scapegoat, and people of any size should be granted the same thorough evaluation that a thin person would be granted. It also presents a misconception that fat people are unhealthy and if they weren’t fat they would be healthy. That’s not true because there are a number of determinants of health beyond body weight.

Bias within the medical system is rampant, and it’s imperative that we begin to confront those biases so that underrepresented and marginalized people can access the medical care they need and deserve. Access to health care should be a right, and even in a country that claims to have universal health care, systemic barriers and bias prevent this from being the case. And while I can do my best to advocate for myself and my medical needs, I can’t break down the systemic bias that has existed for generations. It highlights the importance of prioritizing diversity, inclusion, equity and justice in all fields, but particularly the medical field. We have a long way to go to make our medical access to diagnosis more equitable and accessible, but it gives me hope to see the progress we are making.

Getty image by Katarzyna Bialasiewicz.

Originally published: May 16, 2021
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