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Robert Neubecker

Being open about my multiple sclerosis helps me be a better advocate

This site visit would determine whether the funding for the center where I worked would be renewed. It was critical that we do well—for the center and for my job as education director. But as the panelists asked their questions, all I could think was, “I have multiple sclerosis.” I had been diagnosed a couple weeks prior and was in a state of shock. For months I had noticed my body behaving strangely, for example when my ankle stopped working after I walked a few kilometers. I had known what the symptoms might mean—my mother was diagnosed with multiple sclerosis (MS) in the ’90s. But I had ignored them. I was not prepared to deal with my own battle.

When my doctor finally convinced me to see a neurologist and I got my diagnosis, I opted to compartmentalize and tried to work past it—though moments of complete distress sometimes intruded, as during the site visit. But despite my distraction, we got our funding, and for 3 years after that, I buried myself in my work. I have worked since I was 16 and always have known my next move. I didn’t see why my diagnosis should get in the way of that.

My job involves working with students who are members of marginalized groups, and after my diagnosis I started to advocate for them even more passionately. In graduate school, I had realized that I cared more about diversifying science and creating an equitable culture than I did about research. I wanted to challenge assumptions about students from different backgrounds by developing programs that championed them.

It didn’t occur to me that I, too, was now a member of a marginalized group, nor did I see any relation between my diagnosis and my advocacy. I did not share my diagnosis with most of my co-workers. For me, and many people with MS, the disease doesn’t manifest in recognizable ways, so people only know that I have MS when I elect to tell them. And I mostly remained silent. I didn’t think it was relevant for my work, and I didn’t want to be perceived as less capable. I had an amazing support network in my personal life, but I preferred to keep my professional life separate.

That changed after I decided to challenge myself and look for a new job. I secured an offer after an exhaustive search. But, for the first time in my life, the thought of tackling a new path was not energizing; it sounded draining. What I needed was a break. I could only consider cutting back because I am privileged, supported by my partner both emotionally and financially. Even so, admitting that I needed to slow down was tough. But it felt right.

All I could think was, 'I have multiple sclerosis.'

With the support of my boss, I began to work part time from my new home, after moving halfway across the country to be in an environment that would be better for my MS as well as satisfy personal and professional priorities for me and my husband. And I began the difficult task of truly coming to terms with my diagnosis. I also thought more deeply about what it means to advocate for scientists from marginalized groups. In my case, I realized, taking time off—and being public about it—is itself an element of advocacy. To get others to think about the variety of identities and experiences that make up the scientific community and the importance of inclusion, I need to be more vocal and honest about my disability.

The world defaults to the able-bodied. I have been at workshops where it is assumed everyone can walk a kilometer to the venue and the menu does not accommodate dietary restrictions. The onus is on the people with disabilities or needs that aren’t “standard” to raise their voices for equal treatment. We need to change the default to be a culture of inclusion.

I don’t know exactly what my future will hold when I return to work full time, but I’m getting better at accepting that uncertainty. I do know that, going forward, I will aim to be a better advocate not just for my students, but for myself.

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