Disease Fatigue

I am tired of being tired. I am sick of being sick.

No, there was never a time when I was the opposite – happy and well-rested to be sick!

But the waves of soul-crushing weariness are worse than the ever-present niggle in the back of my mind that says “I am not okay with this situation.” This is not the physical fatigue, in its many different flavors, that comes from my diagnoses. This is a different beast.

  • I’m tired of medical paperwork, of sitting amid white drifting dunes of medical paperwork and sobbing a salty sea.
  • I’m tired of flaking out on friends because my body is flaking out on me, of feeling my hard-won “adult” reliability splintering away, mica under pressure.
  • I’m tired of drawers full of medicine; the half-sob, half-laugh and sick feeling in my stomach when I realize I use pill containers designed to last a week for a single day and they’re not quite cutting it anymore.
  • I’m tired of getting emails from doctor’s offices, because it happens so often that when the notification chime dings I’m starting to jump because it means one more thing
  • I’m tired of phone calls to doctors: I’ve heard the hold music so often for one hospital I can improvise a vocal obbligato over the top, and then cry because I can.
  • I’m tired of the adrenaline jolt when the hospital’s extension appears on my phone’s screen, of feeling hope and fear so intense it robs me of thought, leaving me gasping on the end of the line.
  • I’m tired of managing med schedules, of 4th grade all over again and the problem about the wolf, the cabbage, and the goat crossing the river… except instead of the goat dying, I’ll get messed up instead. Med A must be 2 hours after Med B, and without food. Med C will react with Med B. Med D must be taken with food. You can’t eat unless you take Med B. … it is exhausting, physically devastating to miscalculate, and it happens many many times every single day.
  • I’m tired of physical therapy appointments, when I feel woefully inadequate and physically exhausted from the most basic of things.
  • I’m tired of doctor’s appointments. It’s the endless procession of scrawled blocks of green on a calendar or reminder alarms the day before, reminding me yet again that I am ill . . . as if I could ever fully forget. It is crying from the continual fight to get to those appointments, and the hope they bring of a solution, and the despair when they don’t. And finally, the black hopelessness when the appointments dwindle from a flood to a stream to a trickle and you are left alone in the same fight.
  • I’ve very tired of tests, of calling a friend yet again for a ride, because you’ll be to ill to take care of it yourself… and calling another, when that first choice is busy with their own life, and then a third.
  • I am so extremely tired of hospitals. It’s quaking terror disguised with a grin and a selfie of patterned gowns and lights and monitors and cuffs and questions.
  • I am tired of having to think about where I am going to stop and rest. There is a profound mental, physical, and emotional exhaustion from simply taking a shower or grocery shopping, and knowing I should be grateful for still being able to do even those little things with perhaps some adaptations. And then crying when I don’t feel very grateful, because I want so very desperately to not even think about if whether or not I can make it across the store to get the milk I forgot on your first pass through. I continually map routes for how I will get from point A to point B; it’s Everests and Death Valleys and Northwest Passages all disguised as steps from the parking garage to the sidewalk, or a big cobblestoned hill wrapping a half mile to the next classroom.
  • I’m tired of reading medical research. It’s holding back the thought that n=me, and for every statistic that had this reaction, that did not respond to treatment, that had recurrence, this is me, a human, not a number… and fighting through because of knowing that if I’m not informed, I won’t be able to defend myself against the doctors who are uninformed, and if I don’t advocate for myself, I’ll end up even more sick or hurt than I already am.
  • I’m tired of feeling awful, of not being able to make it through an errant “Weight Watchers” commercial without grabbing for a bucket on a bad day.
  • I’m tired of hurting. It’s a spear made of ice, flickering with flame, plunging into me, as I smile at the girl telling me the elevators are only for staff, while I talk her through disabled student access and NO I DON’T HAVE TO TELL HER WHAT’S WRONG WITH ME TO TAKE AN ELEVATOR INSTEAD OF 6 FLIGHTS OF STAIRS. (And for the record, the next time I came in, she apologized and was very kind.)
  • I’m tired of not knowing. I have about 82% of my symptoms explained by diagnosis right now, with the feeling that could change to 0% at the whim of my body or a doctor the next day.
  • I’m tired of being scared of when the next bad thing will happen – when the next diagnosis comes, when the next crash will happen, when the next time allergic reaction hits, of the uncertainty of it all. It’s that feeling of dancing with the Grim Reaper, a slow, macabre waltz, whenever I risk eating a food I didn’t prepare myself, and even then — is this going to be the time anaphylaxis hits? Will I have enough time to counter it?

Disease fatigue. I heard it called that once, like generations ago there was “battle fatigue” (before the term PTSD/PTS replaced it). Disease fatigue, when the burden of sickness, quite apart from the real fatigue of a disease itself, is overwhelming.

In a strange way, the name itself gives me hope. Not the term itself, no — fatigue in the world of disability is not always, not even usually, something that goes away with rest. No, it’s the very act of naming that is important. Something named can be recognized, and have boundaries. Something named can be endured, and eventually, even if today I can’t actively battle, it can someday be fought.

And like most things named, it too shall pass.

 

 

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In Which I Am Unfair: Vignettes in Campus Ableism

“Oh, he’s at the hospital again,” one of the women in the little gaggle of people walking past my table announced. “Again?” another of the business-wear group commented. Some of them had changed out of their dress shoes to beat-up sneakers. A lunch group or something like it, off for an hour’s break. One of the guys laughed. “He’d better come back with like a broken leg or something this time!” The rest of the group laughed too. “Something big.” “Yes, it doesn’t count unless it’s a full cast!”

I was on the top floor of the building housing a variety of student support services and academic judiciary offices.The little group was joking, in the rather mean-spirited way of much younger and less professional people… say, elementary school students. They just happened to do it in front of a student with invisible disabilities. Nice to know that their colleague’s misfortune was thought of so compassionately, and that their understanding of real injury and illness was restricted to the immediately visible.

************

“She’s always taking medications. Obviously, too, like taking a lot of pills at committee lunches or the department party. Something’s wrong. I mean, a lot of women take a pill every day and all, and that’s fine, but this is a bunch.”

This conversation happened with a colleague, who tried to backtrack when I (couldn’t help it, mate!) pointed out I took a lot of medications as well. Too bad it ended up with him even deeper in it than when he started, of course … his bumbling efforts were more humorous than hurtful, especially as there were a few other women who cheerfully joined in and helped him dig himself deeper every third word.

************

“I know your dietary restrictions – they are very familiar to me too, because I have some – so I’m sure you can find something to eat here because I can.”

Another very kind effort from a very kind person who still couldn’t wrap her mind around the fact that two people with disabilities might have very VERY different disabilities and paths through life. Instead, everything had to be viewed through the lens of her illness. She never really did get that graduate students  are not usually protected by the FMLA or that mast cell diseases are much different than avoiding spicy food after 3 pm.

************

“Oh, so you mean there’s really something actually mechanically wrong? Oh!”

A college administrator who suddenly seemed to understand and be much happier to grant my request for help restructuring my classrooms. I couldn’t help it – I rolled my eyes. Fortunately for me, he was facing the other way. I do so love it when other types of disabilities are judged as less “real” than physical ones, or when it has to be some type of injury that the administrator relates to (like dislocating joints, for example, or sprains) to count. I’d already explained POTS and MCAS by that point, but those apparently didn’t count as “mechanically” wrong. It wasn’t until I remembered and explained JHS-EDS 3 that everything seemed to suddenly click. I probably need to work on my communication, but sometimes I just really don’t want to … 

************

I and another student are seated, slumped and exhausted, on those orange carpet-covered chairs common to 75% of student waiting areas. We’re tutors, nearing the last shift of the day, waiting for our respective students. They’re so late it’s looking like we are not going to be tutoring after all (read: not getting paid after all, either). I’m feeling a bit down about this. The other tutor wonders why I’m upset about having free (unpaid) time, and I explain I missed my bus and had to pay for a Lyft into school so I could work that evening. I at least wanted to recoup my losses.

Tutor 1: “Oh, where do you live?”

I told the other tutor

Tutor 1: “Oh, that’s so close! It’s not far from campus at all. You could have walked that!”

I was tired. I didn’t really want to go into explanations. “No, I can’t. Definitely not in time to get here for work.”

Tutor 1: “I don’t understand. It must take as long to drive as walk. But I guess your legs are shorter than mine!”

Really, really didn’t want to go into it … but I wasn’t much shorter than her, and the way she was now staring at my legs meant she’d figure that out soon. I didn’t want to be categorized as being lazy, either, so … “No, it’s not that. I just really can’t walk it at all, honestly.”

Tutor 1: “I don’t get it.”

I gave up completely. “I know I don’t look it, but I’m actually very sick. I cannot walk from my apartment to the campus in time for work. It’s not contagious, so you won’t catch it, don’t worry.”

Tutor 1: “Oh! I never would have guessed, because you look fine!”

A classic response. At least I already have a selection of answers pre-drilled, and wonder of wonders, here came a student. “Um, yes, I know I often look ok, thanks very much.”

“But you always seem to manage …

Thankfully my student had arrived and I was rescued before I had to explain that my ability to tutor was not proof that I wasn’t sick.

*************

 

Ableism means discrimination in favor of able-bodied people. It isn’t a word I particularly like, because everyone’s definition of “discrimination” tends to vary just that little bit, and it’s so very easy to accuse someone of it. It can range from systemic abuse (such as a corporation not following ADA law) to casual comments about how inspirational disabled people doing ordinary things are. (In my case, I’m actually just fine with being told that I’m inspirational or heroic, because most of the time my mind is screaming at me that I’m a failure. If there are ever other voices chiming out a different message, I’m usually far too grateful to be offended.)

I’m being unfair here, because not only are all of the above based on real things that happened to me this semester, most of the people involved had no idea what could have even been construed as wrong about their behavior. Despite the bit of me that feels like a small tattling child, this is part of the reason I decided to write this post – because some of them will not realize what they did was quite wrong. In this light, in this form, it’s easier to see that endlessly interrogating someone and then using her ability to complete her work and look physically put-together as a marker for disability is wrong. Judging someone on taking the medications they need to survive is wrong (or having the number allowed be related to their sex!). No one in in a professional setting especially should joke freely about a colleague’s physical status – even if that colleague might have ordinarily joined in on the joke.

In the end, the best path forward is probably one I struggle with myself continually.  Wait, and then in the depths of the smallest square of privacy you can find, think about your latest sly witticism. If you wouldn’t want it said about yourself, then don’t tell the joke out loud to Mr. Oral B.

 

8. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

Some problems are the same that every student with disabilities faces when trying to study: I wish they knew how hard it was to get to class on time when I have to wait for elevators or take a different path. I wish they knew that flickering class lights can give me migraines. I wish they knew that it’s not that I’m uninterested, it’s just that my body language conveying my interest is going to look different from everyone else’s. I wish they knew that it they don’t have a lot of choice about whether to actually do agreed-upon accommodations or not — if there’s paperwork and it’s been deemed reasonable, that’s that. I wish they knew that outside class activities are going to take me twice as much work, or might even be impossible. I wish they knew that I can’t eat food when it’s brought in to class, for whatever reason. I wish they knew that being in their office when they’ve just smoked or put on perfume can trigger an allergy attack. I wish they knew when they decide to take the class somewhere else besides the classroom — be that a walking field trip, class on the lawn, or a stroll to the local pub for seminar — I know I’m either going to cry at the agony that puts me in or bawl from the shame of speaking up and asking for a ride, another route, or a different place.

… Everyone else wants to hold class in the pub. Why can’t I just go along? Why can’t I be normal? Why do I have to cause trouble, be special, make more work?

I wish they knew how badly I want to be normal and simply go enjoy seminar in the pub with everyone else.

7. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish some of my professors would realize how horrifically expensive it is to be a chronically ill and a graduate student. I can see it on their faces as I try to fit in a few more hours of work or pass on attending conferences. “But there’s grants that cover some of it,” a few might protest, or “shouldn’t you be writing your dissertation instead of working?” The kinder ones also mention things like “knowing you have to eat” and “student budget.”

I spend literally thousands of dollars each year in medical care. Even once I’ve paid for my insurance and met the deductible, many things that I need to function — including medical devices —  aren’t covered by my student insurance. Then there are the countless other things that add up: Lyfte or Uber, on days when I can’t drive and public transit falls through; crucial supplements; more expensive food as I become intolerant to basic cheap staples like ramen or peanut butter; even delivery costs for things when I can’t find a way to get to a store or a distant compounding pharmacy. It’s not that I’m not managing my money, or that I’m not trying to save, or any of the other common financial tips. (Saving for a rainy day when you are constantly, chronically ill … it’s not a “rainy day,” it’s a monsoon that will last the rest of your life.)  ‘

It is just very expensive to be sick.

6. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish my professors would realize how surreal school sometimes seems to me.

At first, you see, it was hospitals and doctor’s offices that felt surreal. My future life as I imagined it could and did crumple and blow away like dust and ash in rooms with cheerful accent walls, posters of kittens and skeletal systems, and crinkly paper robes. Repeatedly. It was surreal.

Then I spent a lot of time in hospitals, listening to the banter of the night nurses and the jokes of the janitors. Those places became, if not comfortable, at least familiar. School felt surreal then, with its very artificial deadlines and rules. In the ER the deadline for the man who had been hit by a car was real, the rules for resuscitating a patient in cardiovascular collapse because of anaphylaxis were real. School was an absurdity, ridiculous in the amount of effort and stress being expending over 7 pages in Times New Roman that would only ever be read once.

Sometimes it all feels surreal, especially when I jump in between a world where almost everything is life and death to a world where everything is made-up and meant to teach safely. There isn’t a lot of room in my life between those two poles for normal living. I worldjump instead, losing a bit more of myself with each trip until I feel like a ghost, out of place in both planes.

Oddly, the place where there is life and death around every curtain is also the place where dark humor reigns, but the place where there are tests and quizzes behind every classroom door is sometimes taken oh so very seriously. There’s not anything to be done about this — it’s up to me to manage the worldjump. I just wish that my professors knew.

 

5. Things I Wish My Professors Knew About Being A Chronically-Ill Graduate Student

I wish they understood how and why graduate life can be isolating for someone who is chronically ill.

Professors might reminisce about the good ol’ days studying together over drinks, scraping together papers last minute, and doing rambunctious and borderline insane physical stunts. That’s great. But it’s not going to be my life. I can’t rock climb, I can’t go out drinking with my fellow students, and I can’t even be designated driver anymore. I can’t stay up late partying, or even just stay up late most of the time. Even if my mind wants to party the night away, my body needs a heating pad, ginger ale, meds, and sleep.

I’m seen as insular, not engaging with graduate life, non-participatory, etc., and by more than my cohort (most of whom actually understand). Professors have pulled me aside to ask about why I’m not hanging out with the rest of the graduate students. I have gotten kindly meant tips about everything from battling depression (because I’m pulling away from people) to ways introverts can have fun at parties. The social side of professional academic life is important, and professors are watching to see that we’re developing those skills and representing the department well. If I’m not at the 9 pm-12 am conference reception, I’m seen as failing that unspoken test of graduate school life. Furthermore, as a graduate student in the fine arts, there are often alluring late nights of concerts, talks, dinners, operas, showings, and presentations. But I really have to pick and choose which ones I even try to attend, and I can’t do them all. The physical cost is just too high. I still have to teach at 9 am the next morning.

In this age, there are other ways to make contact with people. There are ways to fundraise, to network, and to present research that don’t require robust good health. The field needs to recognize that these options are legitimate and begin to make accommodations a matter of course. Professors need to realize that not all routes through graduate school are going to resemble their own — but until then, I’ll probably still be stopped and interrogated every couple of weeks about my life choices.

I wish they’d realize I’m not deliberately a hermit — I’m just sick.

4. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish my professors would realize that if I’m quiet, curled into a ball, and white, it might not be because I’m emotionally upset. Even if there are tears in my eyes and my face is screwed up! More likely I’m just trying to get through class without screaming in pain, throwing up, or passing out — and possibly all three at once.

I’m not a drama queen that has a bad breakup every week.

I’m just chronically sick.

3. Things I Wish My Professors Knew About Being A Chronically-Ill Graduate Student

I wish my professors would realize that my life as a chronically-ill student outside of college is a lot of doctor’s appointments, PT, clinics, testing, procedures, trips to the hospital, and other usually painful and terrifying things. A lot of these appointments were booked months before staff meetings were scheduled. On the flip side, I’m sometimes called into a cancellation or an emergency appointment quite abruptly. Either way, it can play merry hell with scheduling.

I honestly never intend to ride rough-shod over anyone’s carefully planned day. We all have lives, after all. But if I say “I can’t make it that day, I have an appointment,” it means I can’t make it. I shouldn’t have to defend myself further by telling what kind of appointment it is, and I certainly should not be required to go into detail and defend the necessity of medical treatment. I should not have to refuse to reschedule a cardiology appointment to attend a 15 minute staff meeting about the answer key for a quiz.

I am also not going to feel — or be made to feel — guilty about the decision to prioritize my health. My lack of guilt can be interpreted as defiance. I’ll admit it, sometimes there is a touch of defiance in there — I hate having someone attempt to guilt me into feeling or acting a particular way, and so I find myself automatically bristling and pulling out my best teenager “oh YEAH?” complete with eye roll … at least in my mind. 🙂

But usually, my attitude is much more the result of a certain emotional numbness than defiance. After all those appointments and procedures, I don’t have a lot of emotion left to either bravely defy or convincingly grovel.

I know that as a student with disabilities I may unfortunately have more absences to deal with medical emergencies than able-bodied students. If I could change that, I would. I wish that my professors would realize that I would far rather be sitting in the staff meeting, planning out the answer key, than sitting in an exam room being given another life-altering diagnosis.

 

2. Things I Wish My Professors Knew About Being A Chronically-Ill Graduate Student

Graduate assistants often function as the dog’s bodies of a department. We fetch, carry, grade, make emergency extra copies, and cover shifts and lectures. If something needs to be put on reserve or the guest speaker for the conference needs a ride to the airport, that’s a job for the graduate assistant pool. We’re expected to learn the ropes this way. Sometimes it is fairly useless drudgery, chores that just have to happen for the craziness that is an academic department to remain fixed on planet Earth instead of spinning off into the aether. 🙂 Other times it is genuinely exciting, professionally stimulating, and career molding … but to be honest, there’s usually a lot more of setting up tables and proctoring makeup exams. My department even established a 3 hour service requirement (in addition to any other teaching/assistant tasks we have) and a graduate pool. Any professor can submit a request, and then we of the pool are all duly reminded of our required hours and offered this great opportunity to fulfill them by simply…

As a graduate student with chronic illnesses, I have a hard time jumping whenever a professor demands it. Actually, I can’t really jump at all! I can’t carry heavy loads, I can’t run places, and I can’t help move heavy pieces of furniture around to set up for events or class. I have to take medications on a set schedule frequently, so rearranging my day on the fly to substitute teach class or cover a shift is also complicated. To “run and make a quick copy” involves no running, for starters. It does mean mentally mapping out a building to find a safe route to the copy machine and then taking this often more time-consuming path. It means waiting for elevators and struggling with doors. Then finally, it means waging the battle everyone faces: beating the always-finicky department copy machine, large enough to swallow a small GA, into submission 🙂

In my building, “quick copy” suddenly turns into 20 minutes. No one is very happy about that.

So I wish that professors and the administrators of graduate programs realize that not everyone is going to be able to do the typical graduate student tasks. I wish they realize that the reason they are not getting notifications from offices of disability services about this is NOT because they don’t have graduate students with disabilities. It is because there is no mechanism in place to address this situation. Graduate student chores are not a defined job activity. They’re not directly associated with classwork. Until there is a conflict, the ombuds office is of limited use. It is a gray area, and the only way for me as a student to deal with this dilemma has been to notify each and every person individually. Most of those professors have no idea how to proceed in a situation like this, and there can be a lot of varied responses of differing degrees of appropriateness. It means a lot of confusion and missed opportunities. It takes a lot of time.

I think it’s possible for departments to use their graduate students with disabilities in ways that will still be beneficial to the department and not damaging to the student. It will require more thought. It will require more planning. It will require a lot more tact.

It can be done.

Thankful Like a Fairy

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It’s that time of year here in the United States when little construction paper turkeys appear on fridges and people suddenly remember that pumpkin is edible. Thanksgiving often feels more like a breather in between the heavier loads of presentations and finals, usually with a side of grading. It’s the end of the term, and everyone is feeling a crunch that has little to do with frosty grass or fallen leaves underfoot. Periodically I see little flyers scattered around, all variations on themes about thankfulness, gratitude, and the like. I usually read them with some trepidation, my mind clouded by rubrics and inner debates about the ontology of musical meaning. Most often I feel that I don’t measure up on the thankfulness scale at the moment, and then all I’ll be is annoyed and guilty before my mind scutters back to the meta-musical-microcosm.

That’s because, I’ve concluded, I’m thankful like a fairy.

“Tink was not all bad: or, rather, she was all bad just now, but, on the other hand, sometimes she was all good. Fairies have to be one thing or the other, because being so small they unfortunately have room for one feeling only at a time. They are, however, allowed to change, only it must be a complete change.”
 ~ J. M. Barrie

When I’m thankful, it is an overwhelming flood of gratitude. One the flip side, when I am not thankful, I’m sometimes every dark emotion there is. It isn’t simply sniveling ingratitude, it can be an epic funk and a devaluation of my very existence. That is ungratefulness of the highest order.

However, fairies are allowed to change… and the musician in me insists that practice makes perfect. So here are some of the random wonky things a fairy brain is thankful for on a Monday:

  • Lyft! I’m running late, and for less than a day’s worth of university garage parking a wonderful clean car pulls up to my apartment door and then drops me off at the door to my building.
  • The fish faces my students, locked out of their classroom on the top floor, are making against the glass at me as I walk into the atrium 3 stories below.
  • The fact that the sound equipment and TV in my classroom worked … on the first try!
  • My butt. Sorry folks! Chronic illness can take unexpected tolls on weight, and in my case I lost a lot over the past couple years. If you have a job that requires a lot of sitting then you can imagine that not having much of one can be a little painful. Thanks to the discovery of King Size Fritos, bean dip, and allergen-free chocolate cookies, I’m working my way back to normal weight. It is great.
  • Trader Joe’s fish sticks and Simple Truth potato puffs (aka tater tots). Yes. It’s more borderline junk food, and I can eat it without having a reaction. I love being able to eat without an allergic reaction.
  • My advisor. We’ve had a bit of a chat about my medical conditions, finishing in a brief “how to administer epi” course. When I told him this morning that I was still struggling with the aftereffects of a recent ER-level bad reaction, I was let out of a weekly meeting and got to go home early and rest. I don’t know how this will play out, but today I am very grateful for that understanding.
  • The lighted brick path that sweeps past the hotel, lined with lights and ending in an impressive skyline backlit by a sunset that looks good enough to eat. OK. Maybe I was hungry today…?
  • The long conversation my busy exhausted mom gave to me so I could walk around this evening, enjoying the sunset, feeling safe and not so alone. Truly a marvelous gift. 🙂