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Self Diagnosed Individuals Need To Be Covered Under the ADA

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As someone who’s clinically diagnosed with multiple mental illnesses, it used to rub me the wrong way when someone would self-diagnose themselves. For a long time, I thought that by someone self-diagnosing they were invalidating my own mental illness. I had the incorrect assumption that their illness couldn’t be real without “proof.”

In the end, I realized this is just another way of gatekeeping diagnoses from people who are not as fortunate as I am. Who am I to say someone doesn’t have a specific illness just because they don’t have a piece of paper certifying their diagnosis? I can see the point of view that self-diagnosing can be harmful, but what’s also harmful is saying that someone can’t possibly have a diagnosis just because they don’t have a piece of paper to prove it.

Likewise, who are companies to decide that someone doesn’t have an illness or disability covered under the Americans with Disabilities Act (ADA) just because they don’t have a piece of paper to “document” it? Unfortunately, documentation from healthcare professionals is often a necessity for ADA accommodations, and because of this, many people don’t qualify for accommodations when they most certainly should.

For example, I have had documented ADA accommodations ever since I was first diagnosed at 17-years-old. However, under current law, someone with the exact same symptoms and experiences as me– or even someone who has worse symptoms than me– would not qualify for my same accommodations simply because they don’t have a piece of paper to prove their diagnosis is real.

Don’t get me wrong– I don’t think everyone should be able to walk in and claim they have a disability and need accommodations. There should be a process to justify the need for accommodations, but does it always have to be a doctor’s note specifying the diagnosis? I don’t think so.

For one, many people financially cannot afford adequate health care for their disability. I’m lucky enough to have come from an upper-middle-class background that allowed me to receive intensive mental health care from 17-years-old onward. Now, I’m lucky enough to have a stable, full-time job that provides good health insurance and provides fair compensation. I also know many people are not as lucky as me– especially those with a disability.

In my experience, holding down a job when you have a debilitating disability is hard. And I mean really, really hard. Sometimes, in order to keep the job, you need ADA accommodations. For example, in college to get through student teaching, I needed ADA accommodations due to the high demands of the internship. Without my accommodations, I would not have graduated and found the job I have today. Sadly, the only reason I was able to get those accommodations is because I do come from a privileged background. I do have a clinical diagnosis and documentation from a doctor.

What about the people that don’t? Thinking about my experience makes me think about all of the people who stood in the same shoes as me, but they didn’t have the documentation needed to receive ADA services. They still had the self-diagnosed illness, but because they didn’t have a doctor’s verification they were deemed unworthy of services. Because of that, maybe they aren’t able to graduate college. Maybe they aren’t able to hold down a full-time job, and maybe if their school or workplace offered them the requested accommodations, they would be able to.

The instances of ignoring individuals who are self-diagnosed is a major problem in today’s society. For one, not everyone can afford a diagnosis. And beyond that, not everyone has the self-advocacy skills needed to obtain a diagnosis.

For example, many doctors can be extremely dismissive of symptoms and their severity. In fact, I’ve been in psychiatric hospitals where I’m asked why I’m there because I don’t “look” depressed. I don’t “act” suicidal. If I don’t look and act the part, I’m obviously not experiencing suicidal ideation, right? I’m just in the hospital for some laughs and giggles? Not quite. I was actually ready to kill myself at any given opportunity.

Luckily, through a near-decade worth of therapy, I’ve learned to advocate when I am, in fact, depressed and suicidal. I’m able to say that I do need accommodations. However, this isn’t a skill that comes naturally to most people. If someone does advocate that they have a disability when a doctor disagrees, they are often dismissed as “attention-seeking.”

My point is, as someone who is diagnosed and pays the expenses of their healthcare, I know how expensive it is, I know how much advocacy it takes, and I know how much doctors try to minimize symptoms or withhold “labeling” patients (despite the frequent need to have those labels in order to receive proper accommodations).

And listen, I get that a workplace or school may need documentation, but consider this:

Someone has debilitating symptoms of a disability covered under ADA. They’ve researched the disability extensively for extended periods of time. They identify with many of the symptoms and can extremely relate to others in the disability’s community that are clinically diagnosed.

Why can’t they document their own symptoms with personal letters of reference? Why can’t they explain exactly what they experience, what accommodations they need and then have others write a confidential letter to the self-diagnosed person’s job or school explaining the symptoms they’ve noticed and how it impacts their functioning? Why is there not a single alternative method to a doctor’s note?

It’s 2021. It’s time workplaces realize the barriers that come with receiving proper medical care – including having adequate health insurance, having the financial means, finding a doctor who will actually listen to you and not dismiss your symptoms and having the ability to advocate for your needs from a rooftop (because that’s often what it takes). ADA accommodations should not be reserved only for those who can afford them or have access to the correct healthcare professionals. Continuing to do things the way we’ve been doing them is harmful to the self-diagnosed population because a large majority of the time, people who self-diagnosis do have some sort of disability that is covered under ADA.

We need to stop gatekeeping diagnoses and start listening to the actual symptoms people are experiencing. ADA accommodations should not have to be “earned.” They’re supposed to be someone’s fundamental right. Unfortunately, we’re not at the place in time where this is the case yet. But I hope one day soon we will be.

Image via Getty Images

Originally published: May 7, 2021
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