Tuesday, July 7, 2015

On Medical Leave, Chronic Illnesses, and Guilt

I cross-posted this on FB, with minor differences, so if you're friends with me there, you may have already seen this. If you're not, you should friend me! Email me (beyondjustbeauty at gmail dot com) for my full name, if you don't have it.

Some of you already know this, but: I'm taking medical leave from grad school for part of next year. I have lots of feelings about it, and because I am ultimately an extremely verbal person (a linguist, verbal? say it ain't so), I decided to write about them. If you don't care about the minutiae of my experiences with chronic illness(es), this is not the post for you (and if you wonder what I'm doing posting about something so clearly non-beauty-related, *points to title* *and {personal} tag*). But email me! Or comment? We should do a package exchange (! because getting mail is GREAT, though as my friends can attest, I am absolute shit at getting things sent out promptly; I currently have two packages for friends that I meant to send before I left for the south in June, but...they're still works in progress. Sigh. Definitely don't message me unless you're willing to put up with my lackadaisical pace, that's for sure).

I've had Chronic Fatigue Syndrome ("systemic exertion intolerance disease") for 8 and a half years now. The recent recategorization of the diagnostic criteria for the disease reads like my health history: "[at least] six months of profound, unexplained fatigue and postexertional malaise, as well as a third key symptom: unrefreshing sleep. Patients must also exhibit cognitive problems or “orthostatic intolerance,” an inability to stand upright for more than a short period." (from this NYT post.) It's not just being tired; it's the feeling that your mind is swathed in fog and your limbs are unbearably weighty, like everything is under water and all you have the energy for is lying (laying? both sound fine to me [you can take the linguist out of the linguistics department, but...]) and staring and sleeping.

As is often the case with people ultimately diagnosed with CFS, it took a long time to get a diagnosis. I stopped keeping count of vials of blood drawn at 50, and now the veins in my arms are collapsed. Some doctors said it was all in my head; as time went on with no positive test results or improvement, more started sharing that opinion. Having suffered from severe anxiety and major depressive disorder off and on since I was 11, I was well familiar with how I felt when depressed, and CFS is very different. (This is not to say that I don't sometimes wonder if I somehow brought this upon myself, if I wouldn't be better now if I just wanted it badly enough. This is not precisely helpful; on top of the physical and intellectual limitations of the illness, I get to deal with a nice heap of guilt.)

I was lucky to get diagnosed within a year; I'd stubbornly insisted on going off to college despite my health, and had I not, I may have never gotten a diagnosis or effective treatment. It was too late for me to salvage my work that fall term, and I ended up withdrawing for the term and returning home. It was a bleak time. (I still have the shirt that Dana Firsters gave to me before I left, though!) Save that first term of INCs, I got through college with an excellent academic record, though at high emotional cost. Overall, though, my health was relatively good; walking up stairs was no longer a challenge, walking across campus manageable, and I could get by on 10 or 11 hours of sleep. So grad school! That sounds like a great idea after the rigors of Swarthmore, I thought to myself. Plus, it's school; I can handle school.

And it's true. I can handle school. I just can't also handle normal life things on top of that, things like feeding myself and keeping my house in reasonable shape and having time to spend with people and being able to do crafts and get enough sleep and commute to and from school and play with babies and teach every day and keep up with research and run subjects and obtain funding and all the little not-so-little things necessary for adulthood in general and grad school in particular.

Add in more than a year of dealing with PTSD (a nice parting gift from Swat to go with my student loans), a couple more rounds of depression, some emotional life upheavals, the development of pretty severe IBS (which includes a major sensitivity to caffeine, putting the grad student's secret weapon out of my reach), and a resurgence of CFS symptoms, and you have me. Hi. It's not the best.

For the past 8+ years, I have had to miss out on...just, so much. With the specter of collapse hanging over me, I've gotten very good at figuring out what I can skip (and then often skipping even more out of necessity). I have missed so many colloquia, conferences, parties, picnics, dinners, workshops, classes*, every one another mark in my "How I've Proved a Disappointment" tally. Needing to take care of my health doesn't feel like a good enough reason to pull out of so many things, and saying "oh, I can't make it after all because I'm tired" is hardly the kind of explanation people are happy to receive. You would think after all this time I would be inured to being saddened by what I miss; you would be very wrong.

Hence this post. I mean, partly hence. I'm never sure whether knowing about my health reasons for missing out on things is unnecessary; is it better to be thought melodramatic or flaky? (After this, you might think me both. SUPER.) It helps me to write things out, anyways, so if nothing else I've gotten that from this.

*though never ones I was teaching; gotta pay those bills (plus, yes, I love teaching); and ironically, as instructing international students on English was neither the reason I applied to grad school nor the reason I was accepted

Other things I feel:
Frustrated. It has been 8 fucking years, for God's sake. I want to be normal. I want to be able to put in a full day at the lab, to come home and throw something together, still have enough time to watch some TV or read some articles, get a nice 8 hour night and feel peppy and fine. Not being able to do as much and as well as I know I am (or would otherwise be) capable of is frustrating.

Embarrassed. For one, talk about first world problems. I live in a safe city with a good roommate (unwillingness to clean notwithstanding), a loving family, and enough money to live on; what do I have to complain about? I should be able to handle it all. There's also the embarrassment that comes from not cutting it in grad school; much of my self-worth has always been tied into my academic performance, and putting forth (and being judged on) subpar work isn't the most fun.

Despair. I'm going to have this weird combination of syndromes and diseases forever and I'll never be able to lead a normal life or have kids or a real job or money in the bank. And Frightened: I'm scared that my brain will never return to feeling agile and capable, that my belly will always be angry, that I will always need 11 hours of sleep and a carefully restricted diet, that people will run out of patience and I will be left alone in my illness.

Doubt. Is it all in my head? Do I want to be like this? Maybe I'm not trying hard enough. Maybe I just need to push through the exhaustion. Maybe I should just take pain pills all the time.

Angry. FUCK YOU, WORLD. (And then back to Embarrassed, above.)

Isolated. I attend so few events and gatherings, and I fear that people forget that I exist, or think that because I haven't reliably been present at things in the past it means I'm not interested. It's hard to have a friend (/student/colleague/work proximity acquaintance) who doesn't always follow through, and for that, I am (and will always be) extremely sorry.

Grateful. I'm not dying. I have a family that loves and supports me; I have loans I can live on, so I don't need to work; I have secondary health insurance (thanks, Dad!), so losing my PacificSource coverage doesn't mean having to do battle with the health care exchange; the department and my advisor have been incredibly understanding and nice about the whole thing, even though I'm sure I'm a massive disappointment to them (I certainly am to myself). I have beautiful, wonderful friends who somehow put up with my verbosity and excess of emotions and abundance of expression. My colleagues are incredibly interesting, intelligent linguists doing awesome work, kicking ass and taking names, making me proud to be their associate. There are pills that help mitigate some of my symptoms. Netflix exists! The chins are fuzzy no matter how exhausted I am! Flowers are blooming! The world is not total shit!

I have no idea what it is like to be a healthy adult. I mean that both in the sense of "be someone who doesn't have to take 8 medications a day" and in the sense of "know how to balance my responsibilities such that everything gets taken care of". I tend to push myself to work until I burn out completely, then lose time recovering, then repeat ad infinitum, the whole cycle of which is accompanied by guilt-laden litanies like: "You should have done more {work, research, cooking, cleaning, socializing, [insert activity here].}." "You shouldn't spend any time supporting your emotional or physical health; if you're not working, you're wasting time." "You can sleep when you're dead." "Everyone else can handle it; what's your problem?" "You are selfish."

So I'm stepping out. My friends and family all advised taking a month away from any kind of work, which has never been easy for me, but I'm taking their advice in the hopes that a real, true break will give my mind and body the time and space they need to recover from years of stress and overuse. I don't know if I will ever stop feeling guilty about taking space for myself, and anxious about...just about everything. But I am going to whole-heartedly embrace being selfish for at least the next couple weeks, and try and prioritize my health and well-being above, or at least equal to, my research for the duration of my leave (definitely fall term, probably winter as well, if you're wondering).

One thing that will help is getting to spend more time with you wonderful people! I would love to get tea or dinner or go for a walk or a swim or feed the ducks or go to the beach or just talk on your couch. I cannot promise that I won't sometimes need to reschedule, but know that it is not personal, and I would treasure any time you can make.

And there's nearly 2000 words of neuroses. *drops mic*

I don't know if the time off will bring back my blogging mojo, but I'm trying not to force it. Even if I buy nothing else for the next 9 months (which I really shouldn't, given that I'll have no money coming in), I've got plenty of stuff to talk about, so that's something! I do hope to try and actually comment on the posts I read; I am just terrible about that (I think mostly because, in my head, internet interactions are even more socially fraught than in-person, and as an anxious introvert, I don't have all that much socializing in me), but I do enjoy lurking at your posts (can I use the verb that way? whatever, just did) and should really be better about conveying that.

Now, a question: What TV show do I absolutely, positively need to watch? I've got all this time on my hands, you see...
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