Neek

lol i am surviving. can't wait for the spring quarter to be over. thanks for the info, it's interesting. I just recently found out someone i rock climb with has fibro....he says the exercise, esp of climbing really helps with the pain, which explains how he is so consistent about daily exercise...but then I find it difficult to have the energy to do that all the time even if when i do do it, it seems helpful. He also said that something that really helped him was a medication that prevents REM sleep? i mean...i thought we as humans needed REM for something, but apparently that is when for some people with fibro your muscles over-fire or something and that blocking that helps reduce pain. (sorry this is not me trying to be that person making suggestions, just thinking out loud in relation to what you said). have definitely heard about hormone + sensory perception---apparently estrogen magnifies how brains interpret/experience pain. that explains a lot in my case... health things do feel very systemic...have perpetually had a hard time getting clear answers about what is going on in my body through biomedical tests but through experience can clearly feel connections and know when things are getting out of balance.

glad you have some clarity, or at least as much as a fibro diagnosis can provide. Just curious, what treatment regimen are you taking? I didn't know there was actually anything that could be done for fibromyalgia. (also if this is too personal, just say so, or you can pm me).

ugh, I feel you. I have celiac disease and will basically become completely dysfunctional if i eat gluten and not only do I not get to take advantage of all the free food (le sigh) but sometimes I end up stuck at required events where my dept or school puts 0% effort into meeting any kind of dietary restrictions (and then people look at you weird when you pull out your own lunch box!) I just finished organizing a conference and made a pointed effort to make sure everyone's dietary needs were met just to prove that it is totally possible and financially feasible. Of course, I don't know if any of the people who normally make food decisions noticed, but I felt good about it. and they said grad school was all about the free food....

@ejpril88 and @MaytheSchwartzBeWithYou, to clarify regarding my comments on the loneliness/isolation--which I can see looking back on my original comment was not particularly clear: My department is actually full of friendly grad students, they are people I "get along" with and several who I even enjoy spending time with/talking with as friends or near-friends. My feeling of isolation is specifically regarding my existence as a person with chronic illness/the ways in which chronic illness shapes my ability to do things....like ejprill88 my symptoms are not visible, when I'm feeling like shit at most people might comment on how I "look tired" (but then, that is cast off as "well we are all tired in grad school b/c we work so hard" without people thinking about the fact that "tired" means a lot of different things to different people). I don't really now how much of it is that because I look healthy people don't comprehend what I describe of my bodily experience or how much of it is that people who haven't experienced chronic illness just don't get it regardless of how they are reading my body, but the isolation comes from trying to be open about how this thing is affecting me and others generally not getting it and not thinking my chronic fatigue is any different from "we're all tired, it's grad school." The other piece is not even specific to grad school, but just part of having a chronic illness...people, both in terms of personal relations and professional expectations, are really good at having sympathy for acute illnesses like the flu or for severe issues that might land you in the hospital like appendicitis or something, but people have little knowledge of how to deal with (or perhaps little patience, depending on the person) long term illness that fluctuates...I've found that when I've used friends as avenues to discuss my own concerns about my health, people are supportive at first but eventually just move away/create distance, even when I try to be especially mindful of not asking too much of people's emotional energy. So I find that grad school is especially like that because the students in my dept are like pseudo-friends....I'm only really friends with a few up them, many of them I'm friendly with, and I don't hang out with other people than people in my dept. very much, but they aren't people with whom I can discuss chronic health issues and have anyone genuinely understand. On the upside, I just started participating in a chronic health concerns group through the university's counseling center...we have only met once so far, but in that first meeting it was like everything everyone said just resonated so much...for the first time since coming to grad school I didn't feel isolated in the way I'm trying to describe. And it brought this big feeling of relief of like "I am not the only young person in grad school dealing with a chronic illness." So the isolation is not people being jerks, people in my dept. are definitely nice and friendly people for the most part but most of them just don't "get" what it is like to deal with a chronic illness and don't really know how to respond to a human who is sometimes able to do X, Y, and Z things and sometimes not when they can't see any difference on the surface of me as a person. Does that clarify things at all?

Badddd. Bad bad bad. As someone coming off a 67 hour work week now completely unable to do anything, I recommend pushing to create an ethic of moderation and balance in your dept. I do actually track my working time, and typically clock in around 42-50 hours a week...that is about all I can manage and have it be somewhat (barely) sustainable. Fwiw, a lot of people normalize or brag about working 60 hour weeks without actually tracking their time...I can't find the article at this moment, but I once read an article that talked about how a study of academics showed that basically everyone says they are working 60-70 hours but most are working 40-55. I started sending out a weekly outdoor activities email to grad students in my dept...even though most of them aren't outdoorsy people or choose to do their own activities not the ones I invite them on, the feedback I've received has been that it has helped people feel more okay with taking time off to rejuvenate. So I think as Individuals we can help shift those norms or narratives a tiny bit.

I'm in my second year, have dealt with chronic illness (mainly a cluster of symptoms around chronic fatigue and pain) at varying degrees of severity since 2012. Being in graduate school with chronic illness can be very hard, especially because many of the hegemonic narratives about how one should do grad school involve notions of working all the time, neglecting one's physical health b/c working all the time, etc. First, don't buy into any of those narratives. They're not true. This is real life and we should all be engaging in some kind of balance, chronically ill or not. Second, I definitely felt the questions of is it going to even be possible/am I even capable of getting through grad school, particularly in my first year. I now feel a little more solid on that, but I would say find out who your allies are--perhaps other students in your department, perhaps some faculty. It can be nice to know who it is safe to discuss how health issues are shaping your ability to do work--many professors are okay with that, but not all, so it can be good to carefully get a sense for each individual professor's attitudes. Obviously specifics of what to do depend on your symptoms or what exacerbates your illness, but a few things I do to make sure I keep my health relatively manageable include sleeping enough, eating well, and taking time to just rest even when it seems like the pressures of grad school say those things are "too much to ask." Also, don't compare yourself to others--first of all, people are always facing more challenges than they ever seem to be when you look at them from the outside, and second of all, each person does things in their own way and at their own pace. Comparing your chronically ill self to others is just a recipe for feeling shitty about yourself (I say this even as I still slip into this mode of comparison sometimes). Being chronically ill among predominantly young people who appear to be mostly healthy can be isolating. I haven't solved that one yet. If you're lucky the people in your department turn out to be good friends (since you'll be spending much of your time with then), but that may not be the case, especially depending on their attitudes toward whatever rhythms you seek as a result of chronic illness. I'm still trying to sort this one out...I feel very lonely a lot of the time and feel like there is no space for acknowledging my status as being a chronically ill grad student...hence my searching on grad cafe to see if there was anyone else out there. I'd love to talk further with folks going through this stuff--even if just to create a sense of solidarity and a sense that chronic illness in grad students isn't unheard of.