Should I tell my employer? The risks of medical disclosure.

A message for employers. When research shows a clear bias, disclosure for a massive population of workers is a slippery slope.

Hope August is treating you well, dearest readers,

Here I am in the above photo being radically open about my challenges. It’s both helped and hurt me.

This essay is especially for the BOSSES out there. I mean it’s for all of us, but if you have a staff, I really urge you to read.

Disclosing any medical condition or disability is a profoundly personal choice. But it seems to me, it’s a choice deeply impacted by negative systemic challenges.

So let’s try to change the world, shall we?

There’s a great article out this week in the Harvard Business Review about the decision to disclose a disability.

It’s definitely damned if you do and damned if you don’t. 

As biological humans, we all experience periods of needing physical and mental accommodations. It runs the spectrum. From serious illness to pesky colds to miscarriages to migraine headaches to broken bones to bereavement time, it will happen to everyone.

It’s part of the human story, to pass through these kinds of challenges. 

So why are we so bad at taking care of each other, especially when issues are chronic? Research shows an astounding 61% of  disabled employees have experienced workplace discrimination, “from hiring biases, pay gaps, bullying, and mistreatment.”

It’s no wonder people try to keep disability and chronic illness a secret. Who wants the hassle? Who wants to feel exposed and judged?

Especially when we’re in a category that faces bias already.

But some of us don't get the benefit of disclosure due to drastic medical emergencies. My illness was on socials before I was conscious. My coworkers organized a GOFUNDME for me. And when I returned to work, I was on dialysis. There was no hiding it.

I was a pity employee for a while, frankly. And when new leadership came in, they didn’t know me and probably saw me through the veil of bias, however unconscious. I was held back from opportunities. I was eventually laid off. I went from rock star to “poor disabled and sick new mom.” 

It was identity crushing.

For me, my journey has been very public. Millions of readers, public. Now anytime anyone googles me, it’s there.

So the question exists, is my radical public disclosure keeping me back from opportunities?

And the answer is likely. 

I’ve applied for a lot of jobs. I’ve gotten close. And I’ve gotten ghosted after rounds and rounds. If it comes down to me and someone else, is it possible they don’t go with “Rare Disease Girl?”

75% of people with disabilities face challenges in finding employment.

There’s no doubt in my mind that I’ve lost a vertical of opportunities. But there’s also a clear path of new opportunities for me, especially in the advocacy space. And I’d be a fool to ignore them, because these are spaces where I can be open and honest about my realities.

And being open and honest feels amazing.

Before I was laid off, I had started a discussion with HR about creating an employee resource group around navigating illness and disability. I think this kind of thing is SO NEEDED in the workplace. From understanding the confusing realities of applying for disability, navigating healthcare challenges, and mental health resources - this kind of network could really help break through the stress and fear and shame. 

I’m in the freelance world now, but I do encourage business owners and employees to not judge folks too harshly who need this kind of support. 

I was a rockstar before my illness at work and I was on my way to being a rockstar employee again. Sometimes people need time.

In extreme cases, folks may need new positions or assignments - but for most employees, if someone had a great work ethic before, that identity doesn’t change. I urge managers to get creative. 

The disabled population is the largest minority group in the world. There may even be insights and learnings that could lead to better business practices and efficiencies if leaders with an open-mind could see this. In fact, opportunity and innovations lie in listening to employees who live life atypically instead of discounting them. Those insights might even lead to profits or growth.

When it comes to disclosure, it’s a deeply personal decision. Disclosure could look like a small group of employees - it doesn’t have to be staff-wide. 

But the fact that we are not disclosing often and discrimination is so rampant, tells me that we are doing a bad job at taking care of each other generally.

Employers must work harder to curtail discrimination and bullying. And this extends to mental disabilities too. 

Because, let me remind employers, your staff likely does have disabilities and medical issues you don’t know about.

The stats in LA are as high as 1 in 5 people are disabled, according to LA Public Health. Employees are getting sick. They often have chronic illness. They probably will deal with mental health issues at some point during their employment.

All this will affect their performance in some way.

They just aren’t telling you about it. 

Comment of the Week

“Hi Taylor - big hugs! I thought, after reading a few posts you deserve and need some. Secondly, RESPECT, and July is SO cute!” Victoria

If you’re new here and wondering, “what happened to this lady?” read:

I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.

Thank you to CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.