By Leslie Rott Welsbacher

As I sit at my desk, my degrees loom large behind me, both literally and figuratively. They weigh heavy on my heart and my mind, at once a scar and also a badge of honor. One would think that one of my biggest accomplishments of my life thus far wouldn’t be so painful, but the trauma I now acknowledge from the experience is something I worry that many others like me live with, as well, and may not feel comfortable or able to speak about. I feel I have nothing to lose. I left academia because I couldn’t imagine a life surrounded by people who treated me differently simply for being me. 

When I started my PhD program in 2007, fresh out of undergrad, I was prepared to live my dream. And graduate school creates this bubble that makes you think you are insulated from all things not graduate school. So when I was diagnosed with multiple chronic illnesses just a few months in, all of my plans and priorities changed. So did my program’s attitude toward me.

When I defended my dissertation, I told my committee that I was taking time off to focus on my health. But that wasn’t quite true. I defended my dissertation at the beginning of August 2013 and at the end of August 2013, I moved to New York to begin the Health Advocacy Master’s program at Sarah Lawrence College. I didn’t tell my committee because at one point during a hypothetical conversation with my dissertation chair, before I was even considering a second master’s degree, she had told me that if I ever went on to get a second master’s degree, my committee would see it as “failing” and “a waste”. While I often have to remind myself that medications fail patients and patients don’t fail medications, I also have to remind myself that I did not fail the institution, the institution failed me. My committee did not put the same time and effort into me that they did into other students. Had I desired to go on the academic job market, I would have been woefully unprepared.

And I didn’t just dream this. I attended the same institution for my undergraduate education, where I was a major in the same department, wrote an honors thesis, and won the departmental award for the best honors thesis the year I graduated. I had been sick for several years, but in the absence of symptoms all at once, everything was treated in isolation and was most often attributed to stress. About a month into graduate school, I started having muscle and joint pain after working out. One day, I woke up and the pain didn’t go away. It took many months and many doctors’ visits to finally get a diagnosis after years of being unwell – lupus and rheumatoid arthritis. When I became chronically ill, the change in attitude toward me wasn’t imperceptible. It was obvious. Some told me I would be a “more empathetic sociologist because” I “was sick”. Others told me I would never qualify for tenure and should leave school all together.

I didn’t require a lot of accommodations, but what I did need was hard-fought and hard-won. For my preliminary examination, I knew I could not sit at a computer for eight hours straight. The accommodation was for me to take half of the exam the day before it was originally scheduled and the other half on the original exam day. I ended up in a freezing cold computer lab and could barely move by the end of the first four hours. I went home and spent the rest of the day in bed. I got up the next day and did it all over again. Ultimately, I passed but was definitely worse for the wear. Now, I don’t think that would have been considered a fair accommodation and I didn’t really find it fair at the time, but that was all I was offered, so I had no other choice.  

When I approached Services for Students with Disabilities to create a contingency plan, since both my income and insurance were tied to me being a graduate student, they looked at me like I had two heads. No one would entertain the conversation. And no one would guarantee that my life wouldn’t fall out from under me if I became too ill to attend school, even for a short period of time.

It’s important to understand that this is nothing new. Institutions only took notice because, with the pandemic, accommodations potentially impacted every one. Remote work, extra time, etc. And let’s be honest, with over 133 million chronically ill people in the United States, nearly a third of the population, harping on the “select few” trope is not really that useful either, especially with the prospect of many COVID long haulers expected to join the ranks. And as we’ve seen, as the pandemic wanes for some, accommodations are being rolled back. Even Costco’s early shopping hours. But one should argue that there will always be older, pregnant, and immunocompromised people that could benefit. 

So I live vicariously through my graduate school classmates and their Facebook posts and occasional forays on local and national news. And while it makes me sad, more than anything it makes me angry. Intellectually, nothing about me changed. Much like the additions of MA, MHA, and PhD after my name, the addition of multiple chronic illnesses are only part of my story. They are not all of my story. But by basically shunning me from academia, they are a much bigger part. 

In 2015, in my master’s thesis, “Not Getting in on the Ground Floor: What a Hospital-Based Program Can Teach Us About Supporting Chronically Ill Students in Higher Education,” I proposed that we take the patient advocate role most common in hospitals and translate it to higher education. 

In February, the institution I attended for both undergrad and my PhD released a report entitled, “Report on Graduate Student Experiences with Disability Accommodations”. The report from my school mentioned a similar type position to the one I outlined in my master’s thesis. As a patient advocate, short of saying hire me, I hoped that the conversation might lead somewhere. But it appears that even in situations where it is a clear a position would benefit directly from having someone with chronic illness and/or disabilities lead it, there does not seem interest.

I can only hope that it does not take another eight years for systemic change, but I fear that as the pandemic recedes from the minds of those who do not perceive themselves as vulnerable to it, all progress will be lost and students will be in a worse situation than they were before. As I have watched and celebrated things that we asked and begged for, for years, be put into place, I feel more fear and anxiety thinking if I were a student now, I would be terrified about having to return to normal. For us, there is no return “to normal”. Our normal is a life spent fighting, proving our worth, and making other people comfortable with our normal. 

It’s easy to say that anyone can become chronically ill at any time. It certainly wasn’t part of my life plan. But on the other hand, people shouldn’t have to be impacted for it to matter. But that’s precisely what we saw when the pandemic took hold. Accommodations that chronically ill and disabled people, and students specifically, had been asking and fighting for, became applicable to nearly everyone, and they were very quickly and easily put in place. And as some move on with a false sense of security, it seems that the accommodation falls away, just as easily as they were put in place.

I certainly won’t stop fighting, but it is discouraging to watch the university, at which I was very vocal, act like they had stumbled upon something earth shattering eight years later added insult to injury. I could have written the entire report myself – again – eight years ago. My conversation unearthed something that I wasn’t quite expecting – trauma. A trauma that I had hidden from myself and others. A trauma that I pretended didn’t exist. I suffered at the hands of this institution. And while I made it out, alive and degree in hand, I lost part of myself along the way that I have yet to get back and maybe never will. And I know people who weren’t so lucky, who worked tirelessly but left before they could complete their degree. And deep down I know, that could have been me. And I don’t know why it wasn’t. 

Leslie Rott Welsbacher (she/her) has a Master’s degree and PhD in Sociology from the University of Michigan, and a Master’s degree in Health Advocacy from Sarah Lawrence College. She was diagnosed with lupus and rheumatoid arthritis in 2008, at the age of 22. She is a blogger, e- patient, health activist, patient advocate, healthcare disruptor, sociologist, and writer. She authors the blog Getting Closer to Myself and has contributed to a variety of other health-related sites, including CreakyJoints, Health Central, Health Line, Lupus News Today, Mango Health, and Rheumatoidarthritis.net. Leslie’s story has been featured in the U.S. Pain Foundation Invisible Project: RA/RD Edition, Women’s Health magazine (twice!), Real Life Diaries: Living with Rheumatic Diseases, and on a jacket, “Double Major,” that she proudly wears as a member of the Walking Gallery of Healthcare. Previously, Leslie has worked at the Hospital for Special Surgery, the Partnership for Palliative Care, and the Global Healthy Living Foundation. She currently works as the Compliance & Experience Officer at a community healthcare company in Royal Oak, Michigan.