Of job seeking with MS, toilets and other demons

There are many things I expected to affect my career when I was diagnosed with Multiple Sclerosis. My toilet was not one of them.

And yet, six years into living and working with MS, I can confidently say that job-seeking with a chronic condition has taught me more about accessibility, dignity, and survival than any workplace policy ever could.

Around this time every year, I get reflective about my diagnosis and everything that has shifted since then. This year, I want to talk about what it has actually been like to search for work while living with a chronic illness: the assumptions, the invisible barriers, the small wins, the ridiculous moments, and the quiet grief of trying to fit into a workforce that often wasn’t built with people like us in mind.

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Not everyone wants to know you live with a chronic condition

The truth is, a diagnosis is often hard to swallow—but not just because of the lifestyle changes it brings. Often, it’s the assumptions people make about you once you start talking openly about it. Misconceptions and fear only intensify when job-seeking with a chronic condition.

I don’t have enough fingers and toes to count the many times I’ve been met with awkward silence, heavy stares, and the subtle sweat forming on the employer's forehead when I’ve said I live with MS. And I get it, this probably wasn’t the conversation they were hoping for. But, in all honesty, it's the one they were pushing for when they asked why work-life balance mattered so much to me, or why I was only looking for a part-time role.

I have never made anything to hide the fact that I live with a chronic condition. I had to accept it, so should employers, who want to work with me. And although the reaction might only be human, we can all benefit from opening the topic on chronic conditions and disabilities in the workplace.

The reason I want to work from home is my clean, accessible toilet.

Over the past six years, I’ve had my ups and downs and faced rejection from many jobs, mainly the ones where I was upfront about my MS. But not all of the rejection came from employers.

Why, you ask? Would I reject a job if I’d been searching for so long? Well, I chose my toilet over this employer.

Let me explain:

I was once asked why I wanted to work from home. During my interview, the prospective employer was skeptical about remote work, seeing it as a perk only earned after a year on the job. So they transparently confessed to me: “Only then, would we be open to talk about home-office.”

So when they asked why it mattered so much to me, inside I was yelling: “I just want to use the toilet whenever I please!” My diplomatic answer was, however, “I work my best from home.”

What they didn’t know is that, for chronically ill people, an accessible toilet is a necessity most of us never wish we had. Or that 50% of people with MS develop bladder problems at some point in their lives. And this isn’t unique to MS. It applies to many chronic conditions. 

Sometimes, the only way I can address this need is at my own home. Where my cozy, clean, toilet will be waiting for me at all times.

On another occasion, accessing the bathroom during an interview felt harder than the interview itself. To get there, I had to pass through three doors, walk a long hallway, and enter a neighboring office. There simply was no toilet in what would have been my workspace. 

Of course, working from home is more than accessible toilets. If you must know: home office allows me to prioritize workload according to my energy level. At home I also have the right setting according to my needs. I dim the lights, as much as needed, and reduce sensory overload when my brain asks me to.

So my only ask for employers is to not make home office or remote work an earned privilege. But rather look at it from a different perspective. We can only work the best, where we feel the best. 

What about the good?

Enough about toilets—let’s talk about positive experiences. I do have some.

My first employer, who was honest about my diagnosis, contacted the local MS Association to know how they could help me adapt the workplace to my needs. I didn’t ask for it. It was just given. 

So that’s a nice memory.

Another one: I was once asked what I needed at a company to do my best work. This time, I was the shocked one; eyes wide, jaw dropped. At first, I thought they were just being polite, but they were genuinely interested. I probably should have asked for the toilet, but instead, all I asked for was a ventilator. And honestly, I stand by that choice.

Let’s get nerdy: Multiple Sclerosis involves demyelination of nerve fibers. Heat slows nerve conduction in these nerves, causing temporary symptom flare-ups. Once the body cools, symptoms usually subside. In simple terms: my brain does not function when it’s too hot.

And again, it’s not just me. Wheelchair users, older colleagues, pregnant women, and many others all benefit from a comfortable workspace. Cool rooms in summer, warm rooms in winter—this isn’t just about having a “cozy” office. It’s about enabling people with chronic conditions, and really all employees, to function at their best.

Lucky for me, this company ticked all the boxes. We hit it off. They even have a wheelchair-accessible office and toilets(!!) that smell like roses whenever I go in. 

And yes, I can also work from home.

So where does that leave me?

So yeah, it’s been six years of ups, downs, awkward interviews, and accessibility struggles. We are not there yet. There is still a long way to go before inclusion, diversity, and accessibility stop being buzzwords and start becoming lived realities.

After six years, I keep asking myself: what is it about a chronic condition that makes people overlook academic and professional accomplishments so quickly? Sometimes it feels like the moment I disclose my diagnosis, everything else about me fades into the background. As if alongside my diagnosis, I was handed a piece of paper that read: this will make finding a job even harder.

The workforce is ableist. That is a reality I’ve had to come to terms with—especially after spending ten months recovering from a burnout that spiraled into depression and emotional exhaustion. Then another ten months in a company that didn’t value its workers. Then a few more months searching for a job that would allow me to live with my illness while still balancing my health, financial stability, my relationship, my time, and my personal goals.

And while I’ve finally started learning how to swim against the current instead of drowning in it, I know I’m not the only one still fighting to simply exist in a world of work that was never really designed with us in mind.

Six years in, I’ve learned that job-seeking with MS is not just about finding work. It’s about finding dignity, flexibility, understanding, and spaces where you don’t have to explain your humanity in order to be accommodated.

And maybe that’s the bigger point of all of this: accessibility is never just about toilets, ventilators, ramps, or remote work. It’s about whether people are willing to imagine a working world where more of us are actually allowed to belong.

I’m still figuring it out, still learning, still unlearning, and still trying to make peace with all the demons that come with it.