Chronic Illness and Academia

[do_i_dare]

I know from searching and lurking from time to time that there others in the Chronicle community who deal with chronic illness as professors (or grad students).

I wondered if anyone had seen the article in today's New York Times on "Working While Chronically Ill." It had a link to a few blogs, and, reading through them, I found that they were interesting and somewhat useful, but it brought home to me again how different the life of a professor is from the 'standard' business world. So, I thought I'd see if anyone was interested in talking about dealing with chronic illness and an academic career; strategies, frustrations, little successes, whatever, in a little thread here.

Myself, I have celiac disease, an autoimmune disorder, which wreaked havoc on my health and made finishing my PhD, the market and my first jobs pretty hellish before it was diagnosed. My health has improved dramatically but I'm still learning to manage my health, deal with the fallout of the last year's health crises, and try to stumble along the tenure track.  As if being junior faculty wasn't enough ... Right now, I'm finding myself worrying if I'll ever be able to handle/balance the demands of academia (real and perceived) and my health, or if I should be looking for other kinds of positions.

Anyway; just wondering if anyone out there saw the NYT piece or is dealing with some of the same things. I don't want to play the "but I have a *disease*!" card in the new faculty pity sessions, and amongst the support groups for chronic illness, it's hard to explain the vagaries of academia...

anyway

[namazu]

Hi, Do I Dare,

This is the link to the NY Times post, for anyone interested: http://shiftingcareers.blogs.nytimes.com/2008/04/21/working-while-chronically-ill/index.html

There are many on this forum with chronic illnesses or other non-visible disabilities, including autoimmune diseases, who are working successfully in academe.  Glad you were able to get your condition diagnosed, and that it's something (at least theoretically) manageable.   

It can be difficult to get back on your feet after a setback, but I think academe is in some ways more forgiving to people with chronic illnesses than many other jobs, in that academic schedules tend to be somewhat more flexible (with the exception of teaching, which can be more rigid). 

You'll find plenty of opinions here about things like negotiating for extra time on the tenure clock if you were seriously impeded in your work by your health concerns (some might say "take it"; others might find it risky - both the part about disclosing any health issues, and the part about having de facto higher expectations if you extend the clock) and revealing your health condition to others (though celiac doesn't have the stigma of a mental illness, for example, if you have otherwise unexplained gaps in your record, or simply have to say no to someone's home-baked cookies, you'll have to weigh how much info you want to give away).   

It certainly can be done!  Good luck.   

[do_i_dare]

Namazu; thanks for replying and for posting the link to the NYT article.

I'm interested in the thought about the tenure clock, although very conflicted about it too. I did ask that my load this past fall be adjusted to switch the higher load semester to the spring, which required telling the deans and my chair about celiac. I benefited enormously from having my hospitalizations be in the summer and being able to rest without it affecting my job directly (although it did mean I wasn't fully prepared for teaching in the fall). I wrestle with when to cancel a class, and how to respond to complaints about cancelling class or meetings at the last minute - I only wish I knew when it was coming, and could plan.

People have been pretty accomodating, but I am afraid to really let anyone know how difficult things have been/sometimes are, especially the neurological component of the disease. Somehow it seems a very bad idea to tell the people I want to tenure me eventually that some days I can't remember my own address or concentrate enough to read a page. Or to explain to students that I'm canceling classes because some days I can't stand up or leave the bathroom. I hope to someday get enough ahead of the curve to create backup plans, instead of trying crisis management with a brain like a leaky sieve.

There are some autoimmune disorders that, when not flaring, probably are a bit easier to conceal, but given the sheer volume of receptions and meals my job sometimes seems to entail, mine has been hard to downplay. I don't discuss the symptoms much; and I have to admit to be conflicted between the desire to advocate/educate (I am a teacher after all!) about this vastly underdiagnosed genetic autoimmune disorder and to downplay it as the simple "food allergies". I usually tell waiters I have food allergies, vs. explaining the celiac thing. For my colleagues, it's more "food issues".

I've been on the fora, although not recently, for a long time (and my old user name seems to have a new owner); I'm familiar with some of the resources and will keep looking at different searches. I'm hoping though for a bit of conversation too.

[msparticularity]

I have rheumatoid arthritis, which first manifested while I was still a classroom teacher. I was already doing my coursework toward my PhD, but learning to live with a chronic illness included recognizing that the PhD was now more than a fun accessory - I actually needed to finish it in a reasonable amount of time and get a post-secondary job. The 7 a.m. start time, the loooong days, and especially the hours on end standing on hard floors all aggravated my difficulties.

Fortunately, as it turned out, I love research and seem to be able to cope just fine when I have some flexibility in scheduling. The beauty of long hours spent planning, grading, doing research and writing is that most or all of those can be done from my bed on my laptop when I am feeling a little low.

I am, I know, more fortunate than you, Do_I_Dare, since my flares so far mostly involve pain and inflammation (not to mention exhaustion and crankiness), but not incapacitation. Although I definitely identify with the brain like a leaky sieve!

[do_i_dare]

msparticulairty,

Isn't leakey-sieve brain fun? (actually it can be pretty funny)

I'm curious how you handle the classroom if you have flares. Do you tell students there's a possibility you might need to cancel classes due to illness or what have you? Do you tell your dept chair? Do you have backups or subs for when you're stuck in bed?

I haven't tried writing in bed; I think I'm usually pretty out of focus if i'm at the point of needing to be in bed. I'm also still learning if pushing through helps or hurts. It's hard to define what's incapacitation and what's laziness, for me, somtimes.

(I'm very amused by the PhD-as-fun-accessory concept; picturing me going to me new corporate job in a power suit,  trainly my hood and w/ my little cap on!)

[elsie]

I have had fibromyalgia and other chronic pain conditions for 20+ years, and all of my degrees have come in those years, so I know the frustration and worry. For me, the key is managing my energy. I was fortunate last May to finally have surgery (after at least a decade) for trochanteric bursitis, and my mobility is much better.

I'll have to think about how I manage my energy and post some tips after bit.

[anon4now]

Hi there--I too have a serious inherited autoimmune disease; it is an ADA disability though a silent one. Inform yourself about ADA accommodations for your disease and make sure a doctor is ready to write you letters should you need it.  In my current workplace I have not needed it because I have a great chair who is not ony understanding about sudden absence from meetings, but who has kept my secret (and yes, be very very careful about whom you tell and how). (On the other hand it is probably better for people to know you have Celiac than for them to think you are an overly finicky "food issues" person---you can spin this so that they see and praise the kind of daily heroism it takes to be sick and still work well.  Aim for that perception. But be careful that they don't see you as a wounded one or a whiner---those perceptions can get us tossed out.)

On energy: I do everything I can in bed, too: which means, I have a physcial set up that allows that: not only a comfy sofa in the main library of my house, but a mini-center upstairs and wireless, so that I can use laptop anywhere and can also rest wherever I am writing. I have an Aeron chair which seriously does reduce my spinal pain. I have ergonomic keyboards, props, etc, and I keep well supplied with nonfuzzymaking analgesics. Heating pads, electric blankets and matress pads, etc., are all part of my workspaces.  In short, set up your workspaces for maximum accommodation and comfort of your paticular disease.

When I build my course syllabi I imagine and write up for myself a shadow plan for every single class period: an "in case I am sick" plan that covers the material in some other way in case I can't make it or am on halfpower that day.  I make technology my friend.

I also modify what I do physically in class according to how I feel. This is on a continuum of course:  some days I go in and do the regular plan, but I sit down to lecture instead of being all animated and walkabout-ish; or if the pain is of a certain kind that is helped by motion, I am sure to keep moving and sipping water the whole time; I very rarely cancel class but often adopt a modified mode/style  of teaching.  If I am very sick I might do one of the following things:

1. begin class with the announcement that we will have a short class today and that supplementary notes will be posted on BB. Then I give them the core essentials of whatever, make an assignment, and let them go. And then faithfully post notes and questions for them.

2. begin class with the announcement that we will have a radically student-centered class today, and that the material they have been working on is now going to be turned around and THEY have to use it, teach it, apply it, whatever: often this means using the first half of the class for small-group or paired preparation, and the second half for the groups presenting whatever it is.  This allows you to walk around and listen, and then to correct and add to whatever the groups come up with, but isn't as strenuous (depending on the class). This works NOT well with weaker classes. Works well with smart kids, strong classes, advanced ones. Waste of time for the weak ones, ends up blind-leading-blind.

3. Say to them: I am not feeling well today, so we are going home to work on [your next big thing, term essay, project, whatever] independently. I will be standing my my email until 7 pm to take your questions. I try not to do this but once a semester, saving it for real serious pain.

4. Tell them at the beginning of the semester that from time to time class will be held online on a discussion board rather than physically in class, and you will send that announcement out over BB/email, so they need to check frequently (which they all do anyway).

I have a lot of other tips, but right now my sitting up/email time is over (that's another thing---keep limits on your physical self, only an hour of email at a time, or whatever physical good you need to do for yourself). 

Hope this helps---hang in there----I'll come back with more if it's helpful.

[elsie]

One thing I just thought about: I know Powerpoint has a lousy reputation, but it's a lifesaver if you have a chronic illness, especially if it's one that tends to make you feel foggy. By preparing the presentation ahead of time, you can make sure that any announcements or information that you might forget are included. It also helps if you have any upper back, neck or shoulder pain that makes it difficult to write on the chalkboard.

[dept_geek]

Elsie has an *excellent* point. It sounds like Elsie & I have had much the same struggles - entering academia after the diagnosis, completing all that education, etc.  To make it more exciting, I have been diagnosed with (and have gotten treatment for) a major-league sleep disorder. Now that it is being treated, I can almost function.

Anything you can do to help fight the fog will just make life all that simpler. I write down things. Lots of notes, lots of powerpoint. And I do it well ahead of time so if the fog clears, I have time to re-adjust my notes with the new material.  (Bonus: the students think I am very well prepared, and I get evaluated accordingly) I don't tell them why I do any of the prep coping skills I have acquired. They really don't need to know.

On the bad flare days, I lean against walls, desks, whatever to avoid standing. I hide in my office, too. 

Carefully read anon4now's post. There is a ton of great coping skills within.

And it's my turn to sign off. My hands just quit working.

good luck.

[msparticularity]

msparticulairty,

Isn't leakey-sieve brain fun? (actually it can be pretty funny)

I'm curious how you handle the classroom if you have flares. Do you tell students there's a possibility you might need to cancel classes due to illness or what have you? Do you tell your dept chair? Do you have backups or subs for when you're stuck in bed?

I haven't tried writing in bed; I think I'm usually pretty out of focus if i'm at the point of needing to be in bed. I'm also still learning if pushing through helps or hurts. It's hard to define what's incapacitation and what's laziness, for me, somtimes.

(I'm very amused by the PhD-as-fun-accessory concept; picturing me going to me new corporate job in a power suit,  trainly my hood and w/ my little cap on!)

Until this semester, I did pretty well. I was always able to drag myself in, knowing that I could go home and get in bed with my dog and my computer before too long. Also, I could sit to teach rather than standing and moving around.

This semester, the stresses of the job search, combined with some increased professional responsibilities, really nailed me. I got sick - over and over and over - and that rolled into a long series of flares. I have had to cancel class a couple of times because I was just not capable of rising, dressing myself, and getting to school. Fortunately - because I knew when I set up my syllabus that I would be traveling a lot this semester - I had left a lot of flexibility in my scheduling. Also, what I'm teaching is two large sections of a 100-level core course that isn't a prerequisite to anything, so I didn't have to worry about leaving out anything essential if a changed what I was doing.

Next year, in my new job, I'm going to be teaching all grad classes. Given the stresses of a cross-country move, I'm thinking a lot about how to set things up. I'm thinking I may (for the first time) let my students know that I have a chronic disease, and may need to hold class meetings on Blackboard if I have a major flare. One of the courses is a year-long research class, so I can plan for in-class activities that are highly collaborative and rely less on me to facilitate. That way, if I'm ill for a class meeting my grad assistant can provide coordination and they can go ahead and meet without me, if necessary.

And, given that I'm having a difficult week and the brain-like-a-sieve experience, that's about as far as I've gotten at the moment!

[nearlydone]

Hi. There's a guy who has the same disease and he is a professor and writes a column for the Chronicle.  He talks about his illness at length in his book, which is called something like "My First Year on the Tenure Track" or "Life on the Tenure Track."  I don't know where I placed the book so I can't remember his name but I know he teaches at Assumption College.  From what I remember, he had to take part of the semester off during his first year because the disease sent him to the hospital.  Maybe you will find his story inspiring, though, because he bounced back.

[hegemony]

I have a chronic illness too, and it's one of those "invisible" ones, which means that it's harder to convince people that despite my blooming cheeks I am really not very well at times.  I don't tell my students anything about it.  The best thing is to plan the term meticulously beforehand, so that every quiz is written, every class is mapped out, etc.  So that if I have a flare-up, all I have to do is show up and follow my own directions.  Sometimes things get out of control anyway, of course.  I also find that it helps if I can assure myself of a huge amount of time for sleeping, say 9-10 hours.  Naturally, it all begins to fold at some point, generally around week 6 of term.  Then I stagger on through to the end.  What gets me is that sometimes finishing the term with everything attended to is nothing short of a miracle, yet those with chronic illnesses generally don't get much credit for it.  "Look!  I graded a zillion papers, I was on time, I made it to every class, I fielded umpteen requests for help, complaints, and emergencies, I attended committee meetings, and I took care of all my responsibilities!"  "Yep, you mean you did your job."  Sometimes it's like climbing Mt. Everest, yet you get credit for having walked up a small hill.  Still, this profession is a lot better and more flexible for those with chronic illness than most jobs.

[msparticularity]

I also find that it helps if I can assure myself of a huge amount of time for sleeping, say 9-10 hours. 

This is understating it a little, for me. I have difficulty with sleep because I also get a lot of joint pain when I am having a flare, so spend too much time lying awake in pain. If I take meds for the pain, I either end up feeling sick and groggy, or need longer to sleep them off. If I don't take meds, it just takes me longer to get a reasonable amount of sleep. It's not unusual for me to spend 10-11 hours in bed when I'm having a flare (like now).

[gourmetless]

I have a chronic illness too, and it's one of those "invisible" ones, which means that it's harder to convince people that despite my blooming cheeks I am really not very well at times. 

Exactly.  I have not told my colleagues nor my students.  They have noticed some symptoms from time-to-time, but I just say I am not feeling well when asked.  I try very hard to be 'on' when at work.  This works, mostly, if I don't have very long days.  I, too, schedule as much sleep as possible, including naps in the afternoon.  I also schedule work pretty strictly for myself.  I make a plan daily, and get the things done that are on the plan.  I break up grading into piles and do it a little at a time.  Organization helps immensely. 

"Leakey-sieve brain" is a pain in the tuckus.  Also, energy and muscle weakness are par for the course.  This is definitely where the planning comes in handy.  I find that, personally, I have learned my limits and know how to avoid flares (for the most part). 

I also eat healthily, exercise, and have a loving SO and animals.  I avoid negativity.  Me-time is also a priority.  There will always be lots of work to do.  I will do it better if I am happy in myself.

[lenniel]

I, too, have a chronic and actually terminal illness, and do not let it slow me down unless absolutely necessary.  I am blessed by being pain-free, though I suffer from bad migraines as a result of oxygen deprivation when I have a bad day.  I went from being a marathoner to someone who can still walk, thank goodness, but can't climb stairs without gasping.  Humility and patience have been lessons I needed to learn, as well as humor!

It is terrific that your department is supportive, and according to the ADA, as noted here, they have to provide accomodation.  My illness is is not visible, and I actually went back to finish my PhD after diagnosis because I realized that I might not have much time left, so why wait?  Only a very few of my colleagues know, however, because despite the rules in place protecting people with illness and disability, there is still a lot of subtle - and not so subtle - discrimination.

I've structured my days so that I can work when I am most effective and allow rest breaks when I can.  I also get as much exercise as possible for stress relief - which is allowable for my disease but not always for others.  One piece of advice I read here that is so true is giving oneself permission for having bad days and celebrating seemingly small triumphs.  I'm happy if I can walk up a flight of stairs more than once a day, and on bad days, I give myself props for meeting my obligations no matter how small.  The mind-body connection is very powerful.

Having backup plans is helpful in negotiating the bad days, and I always do the same.  There are some things I can't plan for, but even perfectly healthy people get sick.