Reimagining your Professional Identity as a Scientist with Chronic Illness – Part I

In my last post, comparing my experience being a scientist in government vs. academia, I had promised to talk a bit about how I got there. Admittedly, it’s a bit surreal to me, because this time last year, I was practically despairing that I might not have any career at all, forget one in science. Having experienced the pressures of academia first hand, I knew it wouldn’t be conducive to my health to continue in it. But it was immensely daunting to seek a life after academia as a scientist with a chronic illness.

In this series of posts, I will discuss my story — it has been a long, and in many ways, is an ongoing journey to redefine my identity. But before I could do anything else, I first had to assuage my feelings of guilt for wanting something different out of my life in the first place.

Step 1. Overcoming feelings of guilt and loss.

Ever since I joined my lab, it was made clear in no uncertain terms that I was being trained for an academic career. From the boss’ point of view, that’s what a graduate program is designed to do. It’s an apprenticeship model, where your mentor trains you in the arts and crafts of the trade, so you carry their mark forward as you grow in the field. That is your job, and your responsibility.

So when my body couldn’t handle double the full-time workload that is expected of the field (I was probably working under 40 hours at the time trying to get my health back in some sort of order), I was immediately relegated to the side. Once a promising student, I was now a waste of time; a wayward kid; a lost cause. And I internalized some of that at first, and felt guilty for letting my advisor down. I knew he had high hopes of me, and I felt guilty for not being able to live up to it.

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Guilt is a fire that scorches the soul

But there was another kind of guilt at play, one that hit at my core. Academia is still a very male-dominated field; I felt I once had the potential and motivation to add to the roster of successful women in academia. But there are even fewer disabled and chronically ill scientists in the field. We can be ostracized at best and actively discriminated against at worst. So we hide our disabilities, afraid to stand up to those who look down upon us for fear of ruining our future prospects.

I felt like I should try to make it as a successful academic scientist, even more so now that I had fibromyalgia, so no one could doubt our scientific acumen! Once at a stable point in my academic career, I could raise awareness for our cause without fear of retaliation; mentor more students with disabilities; try to change the culture in academia that sees us as lesser mortals. I felt like I had the responsibility to stand up to the establishment that had looked down on me. Walking away from it felt like walking away from a battle, like they had defeated me and my spirit. And I felt guilty for giving up on all the future disabled or chronically ill grad students I might have been able to help.

It took me a long a time to see that these feelings of guilt were misplaced. It is my life and my body, and my first responsibility is always to myself. To keep myself healthy, and active, and in a mental state to be able to enjoy life. It is my responsibility to find a fruitful direction for my own life, one that suits my current needs.

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At the edge of all light

To feel beholden to others’ expectations of me is only a noose I held around my own neck. I realized that is never how I lived my life so far, and it would be a mistake to start now. As far as thinking of my own past dreams or future hopes are concerned, they only serve to make me feel worse. They do no practical good in helping me carve a way forward.

I also realized that advocating career over self-care is hardly being a good role model! Especially with a chronic illness like fibromyalgia! How can I help other people if I cannot even help myself? Perhaps my limited energy is best spent raising a candle to the issues from the outside, rather than burning in the fires on the inside. It was time to let go of my misguided sense of pride.

The first step in any journey is often the hardest to take, but also is the most important for it sets you on a new course. Once I was able to get over the feelings of guilt over leaving the career I strove for for so many years, I felt like a fog had just cleared from my view. By the time I graduated, that was perhaps my single biggest accomplishment; bigger, even, that the Ph.D. And when I finally could see the different directions my career could possibly go in, I felt the glow of a new hope warming a heart grown cold and scared.

In the next post(s), I will talk about the specific steps I used to retrain my brain to think of new possibilities and new directions. I know when I was seeking some of this information, I had none I could turn to. So I hope that this series of posts will reach future grad students and scientists in a similar boat, and I hope they find some value in it.

Gentle hugs,

Fibronacci