Saving Face with a Chronic Illness

Graduate School is full of overachieving people who care a lot about one thing – their research. That, and their perceived image with regards to their ability to face difficulties.

Crying or any expression of disability or needing accommodations to overcome disabilities (aka not always being 100% self-sufficient) is considered “weak” and people who engage in such are often considered as “not being suited for graduate school.” Therefore we are mainly a clan of somewhat anti-social stoics, who bottle up everything, and then get dead drunk to release it. There is some bizarre irony here that a bunch of scientists (biologists, no less) think binge drinking is a better alternative to crying if you want to let it all out!

As much as I recognize the idiotic nature of the culture, I have to admit that, for the most part, I am one of the stoics. I don’t binge drink to release tension, but I am certainly not particularly good at showing emotions either.

I have many faces, figuratively speaking, and I am very careful about what I show to whom. Part of it, I believe, is a trust issue – I have been burned before and I am careful to not get burned again. I find people (including therapists) are often incapable of understanding the complexity of emotion one might feel, and have the tendency to box you into one group or another, without recognizing that no box might truly fit you. I have found this experience frustrating to say the least, and not one I care to keep repeating. To add to this general tendency of the human population, the graduate school environment certainly seems to select for those who are so wrapped up in one thing – their science – that they are incapable of complex human bonding.

This combination of factors made it very difficult for me when I developed fibromyalgia as a Ph.D. student. I found myself fairly isolated and unable to really explain my condition to many people, including my boss, without feeling apologetic for developing a chronic illness. I am the first to admit that it is stupid to feel that way, but I suddenly felt the need to save face by making sure I am extra efficient with my time and trying not to outwardly show what the pain and exhaustion was doing to me.

The latter largely failed after a time when my mobility started declining. So then I turned to humor but still only told the closest people – my boss and immediate colleagues. They have been generally very nice about it, but I still refrain from truly sharing the impact the disease really has on me. Recently, I even talked about it in medical terms with one of my committee members, who was fairly nice and curious to learn more about the disease – I was proud of this because I wouldn’t have been able to have this discussion a year ago, but I didn’t have a choice now as we had to climb stairs and I was slower than this man some thirty years my senior. Yet, we talked about fibromyalgia as one might talk about a badly infected tooth that needs a root canal job.

Nobody can truly understand what it is like to live with a chronic pain condition unless they either have it themselves or know somebody very close who does (a spouse/partner, for instance).

So I continue to be unable to talk about the havoc that fibromyalgia has wrecked in my life, in person, with anybody other than my husband. I don’t expect this to change anytime soon. Yet I know that there are others like me, in grad school even, who are fighting their own chronic battles and they must all feel like me too. It is doing a disservice to them all if I just stay quiet and keep walking like a character in Metropolis. So I met myself halfway and started this blog. I have only shared it with a select few, but this is the start of me sharing my inner universe with the world outside.

Sometimes I wonder if starting this semi-anonymous blog is just another way to save face, to make up for an imaginary mistake that I did not choose to make. But then I think perhaps this is my way of accepting one of my many faces – the face that’s always in the shadow, the one that cannot be easily named, the one that shines only in the dark.

Featured image: Ruby Tuesday (11X14, oil on canvas)