Successfully completing a dissertation with a chronic illness

This is a guest post by Elita Baldridge

Most people aren’t familiar with the challenges of working on a PhD with a disability or chronic illness, and yet there’s a good chance that someone you know is in this situation and isn’t talking about it. This is the first in a series of posts about my experiences completing a PhD with a chronic illness, and about the things that we can do to support our colleagues and students so that they can have the greatest chance at success. Even with the best support in the world, it’s not always possible, but it’s a lot less likely without support.

Introduction to the social model of disability

To give you a little background, I developed a chronic illness during graduate school, eventually being diagnosed with fibromyalgia. Developing a chronic illness gave me a crash course in the social model of disability; here’s the general drift.

A lack of support and accommodations is a major factor in people being unable to function effectively.

The biggest thing that keeps me from functioning effectively at this point (with accommodations) is my chronic illness itself. However, that’s the most disabling factor for me because I had the accommodations available to reduce the impact of my condition as much as possible.

For more information, check out the folks at PhD(isabled), @PhDisabled.

Personal challenges

This is the sanitized, short version of some of my symptoms. I don’t particularly like to share these sorts of things because I want to be seen as a good ecologist, not as an inspiring story of an ecologist that has triumphed over terrible odds. An ecologist is a person, a story is a thing. However, I think that it’s important to understand that while your colleague may be cheerful and smiling and upbeat, they may also be hiding a lot, and being kind and providing accommodations is a small thing that can mean the world under the circumstances.

Cognitive dysfunction: This manifests itself in many ways, but when this is severe, I can’t actually think well enough to read anything more complicated than fairy tales, let alone think well enough to do research.

“Discomfort”: Pain is supposed to be a meaningful signal that something is wrong with the part of the body that hurts. However, with fibromyalgia, things hurt without damage occurring. Pain from fibromyalgia tends to be unresponsive to a wide variety of medications, and one of the best ways of managing the pain is through an exercise regime and visualization. I tend to use the word “discomfort” rather than “pain”, because pain is supposed to be a useful signal of damage, fibromyalgia pain is not useful, and calling it discomfort helps me to try ignore it more effectively.

The clothing thing: The majority of clothing does not work for me any more, because of the feeling of wearing an upset anthill.

The stinging nettle thing: Doing computer work while hands felt like I had been crushing stinging nettles with them.

The bucket thing: Keeping a bucket by my desk while I working, because I was throwing up because of discomfort. Also, avoiding eating before meetings on bad days, so I could make it through the meeting without throwing up into the bucket.

Mobility impairment: This depends on the day. Not a problem at a computer though, so that’s fine, unless on site and the mobility impairment access is garbage (i.e., mostly everywhere).

With sufficient support and accommodations, it is possible to do good science and get a PhD while living with a disability or chronic illness. Dealing with the illness itself is difficult enough, without also having to address barriers that are put in place by people and institutions not working to make things accessible. It’s not that difficult to make things more accessible, and making things more accessible for folks with chronic illness or disabilities also tends to be just good design that makes things more accessible to people without chronic illness or disabilities. Over the next couple of posts I’ll talk about things my lab and university have done to make things more accessible and therefore facilitate my PhD. I’ll also talk about practices that I’m now putting in place for things like seminars I give to make sure that they can reach as many scientists as possible, not just the able-bodied ones.

6 Comments on “Successfully completing a dissertation with a chronic illness

  1. Excellent post, Ethan. As a person with 2 disabilities, I can relate. One is a chronic, but non-lethal form of leukemia. The other is PTSD. When I was a PhD student at the University of Denver, my mentor actually sat me down and explained, “PhDs aren’t for everyone. For example, people with disabilities shouldn’t have PhDs”. This conversation stunned and insulted me. As it turns out, my mentor had alternative motives, and she attempted very hard to plagiarize my published works and confiscate data for which neither she nor the university had any claim of.

    My PTSD was exasperated by a verbally abusive professor. So severe were these attacks that other graduate students frequently took me aside to express concern. When I attempted to withdraw from this professor’s coursework & remove her from my committee, my professor placed me on an unfair academic probation, forcing me to work with the abuser. The probation stipulated if I did not succeed, I would be terminated. The abuse escalated and I appealed the probation. In less than 2 months the university withdrew my scholarship & all funding. My mentor resigned as my mentor & fired me from my paid research position. Then, I was terminated.

    The University of Denver not only refused to grant reasonable accommodations for my disability, but they used it as a weapon against me. However I persevered, completed my research, and earned an alternative international doctoral degree.

    Disabilities make life hard… jerks make them even harder.

  2. Thanks David, but all I did was post it, my former student Elita Baldridge who just finished her PhD is the author.

    I’m really sorry to hear about how you were treated. That’s absolutely terrible. We all need to work our hardest to remove barriers, not to add in new ones.

  3. Pingback: External challenges of chronic illness (in graduate school) | Jabberwocky Ecology | The Weecology Blog

  4. Pingback: Sciencing with a chronic illness: Tips, tricks, & technology | Jabberwocky Ecology | The Weecology Blog

  5. Unfortunately, the majority of professors doesn’t care about whether students’ excuses are reasonable or not. And the reason they become doctoral adviser simply because this will help them in their career. Nothing more, nothing less. Surely, there is a bunch of great professors who are dedicated both to their work and students. But from what I’ve experienced when I was in college professors are concerned about materialistic benefits of ther work. I’ve even experienced a professor trying to extort money from me. That was horrible. Luckily, I reported him. Still, he was just suspended. And if we want to ensure that every student feels save in college, we should resolve the issues concerning not only student-bullying-student issues, but professors-taking-advantage-of-their-positions issues. Actually, being a grad student is hard enough but when a supervisor starts advising vaguely and not to the point, and you end up trying to write your dissertation on your own. Surely, going to dissertation and thesis workshops and reading blog entries from http://dissertationwriter.org/ could help but it won’t solve all the problems that you have with your dissertation. Anyways, when it comes to getting help from professors and other faculty staff students always end up frustrated.

  6. I am still in process of recovering from years of predatory abuse by a mentor. Only recently was I able to stand on my own two feet- and guess what? The tables have at long last turned.

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