When I Got ALS, My Job Disappeared TooManaging your workplace and your ALS diagnosis1/17/26

On the day I was diagnosed with ALS, a letter from my employer arrived in the mail.

It wasn’t a card. It wasn’t an offer of support. It was a notice from Human Resources informing me that I was “at risk” of losing my job.

I had worked for a multibillion-dollar pharmaceutical company for five years. I’d been promoted twice. My performance reviews were excellent. I believed I worked for a company that valued people—especially one that constantly touted its mission to “serve patients.”

But when I became one of those patients, I was treated as disposable.

Before my official diagnosis, I had been on medical leave for months due to severe neurological symptoms: falls, muscle spasms, spasticity. On the same day my doctor confirmed ALS, HR informed me that unless I returned to work, my job would be terminated.

I reached out to HR and my manager for clarification, accommodations—honestly, even just basic human decency. What I received was silence. The company rejected my physician’s recommended accommodations without explanation. They ignored their own ADA policies. The message was unmistakable: return at full capacity, or you’re out.

Ironically, this same company regularly promoted its “compassionate” benefits, including paid leave for employees diagnosed with cancer. But those policies applied only to a narrow set of treatable illnesses and appeared to function more as public-relations tools than genuine safety nets. They didn’t apply to me.

I was furious. Surely this had to be illegal.

I contacted half a dozen law firms. I learned that yes, I likely had legal grounds. But I also learned that suing a corporation of that size would be a long, exhausting process. Even in the best-case scenario, I might recover about a year’s salary—minus roughly 40 percent in legal fees. For someone facing a terminal illness, that isn’t justice.

My options were brutal:

1. Return to a toxic workplace with a bullying boss and accelerate my physical decline.

2. Quit, placing my dual-income family under severe financial strain while facing the staggering costs of a terminal disease.

3. Fight my way onto long-term disability to at least preserve my health insurance.

With legal help, I chose the third option. It was the best path for me and my family—but it should never have been the only viable one.

Here’s what most people don’t realize: while the law says an employer can’t fire you because you’re sick, they can claim you’re “unable to perform the essential functions” of your job. They can deny reasonable accommodations until you have no choice but to leave.

I know I’m not alone. I’ve heard from countless people who went from being celebrated employees to being quietly pushed out once illness struck. The tactics vary—downsizing, restructuring, sudden performance issues—but the outcome is always the same: you lose your livelihood at the exact moment you need it most.

This is the reality of Corporate America. Companies do not fear legal consequences from employees. Everyone is replaceable. The image of compassion matters far more than the actual care of the people who keep the business running.

If you find yourself in a similar situation, my advice is this: set aside anger and the desire for justice, and assess your circumstances with a clear mind. Focus on what will create the most stable financial outcome for you and your family. This disease carries an enormous financial burden, and that reality must be confronted honestly.

A few practical lessons I learned:

• Find and study every company policy related to medical leave, short-term disability, and long-term disability. You may have to dig deeply to locate them. If you’re lucky, HR will help; in my case, they did not, and I had to get creative.

• Look closely at policies for chronic or serious illness. My company had a policy for employees with cancer, but a detailed review showed it didn’t apply to ALS—and, frankly, offered little real support to most cancer patients either. It was largely a “feel-good” policy with minimal substance. Read everything carefully.

• Seek legal counsel—but do so strategically. Speak with multiple attorneys and choose one aligned with your goals. Several lawyers I consulted wanted to send a threatening letter and pursue a settlement, taking 40 percent regardless of outcome. In some scenarios, I could have ended up owing legal fees rather than receiving compensation. Be cautious. Think about the end result you actually need.

No one should have to fight their employer while fighting for their life. But until the system changes, preparation—not outrage—is often the only protection we have.