Figuring out a new identity: how my diagnosis was received by those around me in academia

When I was diagnosed, I had been with Marc for about 6 months. Our relationship had gotten to a kind of weird funk because of fibro, to the point where he told me that I seemed like I just did not want to have conversations with him anymore (not true, of course — I just did not have the energy to hold in-depth conversations, being barely able to comprehend simple questions like “how was your day?”). Getting a diagnosis was both a relief and terrifying. I had an explanation for what was going on with me, but something was actually wrong with me.

Marc’s reaction was fantastic – he asked me how he could best support me and make my life easier. Reactions from my closer friends – the ones who knew that I was struggling with a slew of symptoms that got no relief – ranged from being grateful that I finally had an answer to wondering what exactly fibromyalgia is.

The reaction from my professors was overwhelmingly positive too. All of them told me to take time to process my new diagnosis and to take care of myself. Even though I had medical documentation that I could offer as proof, I had established a good enough relationship with them that they took me at face value and didn’t question the authenticity of my diagnosis.

The real issues don’t stem from telling people your diagnosis — they rear up in the aftermath, when you are trying to adjust to life with fibromyalgia. 

Graduate school, unsurprisingly, requires immense brain expenditure. It’s not unusual to read a book a week, or a series of articles totaling hundreds of pages, and then spending time discussing in detail. Seminars are long and require you to sit in often uncomfortable chairs for hours. On top of all that, there is your own research, and the extra things you should be doing beyond classes — preparing articles for publication, going to conferences, serving on various committees, etc.

Most of these things are now more difficult for me. Having to sit for three hours in an uncomfortable chair is torture and sometimes leads to pain flare-ups that last days. I have to make an extra effort to focus on discussions in class which then leave me even more drained. This affects the quality of my work, the amount of extra things I can take on, and my willingness to volunteer for new projects.

It’s difficult to keep reminding professors that my disability makes things difficult for me. I feel like I’m making excuses, because it has been a year since my diagnosis and I just should be BETTER by now. I worry that their goodwill will thin out, that they will stop thinking of me for new opportunities, that they think I am making excuses when I just can’t get my brain to focus on something. And I don’t want special treatment, either. I want to be held at the same standards as my peers, but my reality is that chronic illness makes it a million times harder.

I need more time to fulfill the requirements and I can’t have as busy a load as my program would like me to have, but that does not mean I can’t do good academic work.

I find myself constantly apologizing to my professors for taking longer than I wanted to finish papers or do things, and feel I am constantly playing catch-up. I know I can do the work, I know I can do the work well, but I don’t know how to balance fibromyalgia with it all. Simply ignoring it obviously does not work, but I also don’t want to let it define my life and my abilities.

It’s a weird sort of limbo.

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