The No-Matter-What Rule: Chronic Illness Version

A recent Chronicle article titled "The No-Matter-What Rule of Academic Motherhood" caught my attention recently, not least because a good many of my similarly-aged colleagues around the country have recently become mothers in the past two years. Childless, I cannot imagine the extra work of raising a whole human being while also working the academic track.

After thinking about it some more, I thought perhaps I could add a little something. There is also a No-Matter-What rule of Academic Chronic Illness, though it is less written about, and perhaps less known as a challenge.

I got sick in 2010, but wasn't diagnosed until a complete physical collapse in summer of 2011. Swollen and painful joints, extreme fatigue, complete collapse after working too many hours, or doing anything physical, and constant bouts of colitis finally landed me at a rheumatologist who diagnosed me with Ankylosing Spondylitis and/or Rheumatoid Arthritis.

I worked in a boom-and-bust mode. I was embarrassed that I was out so often, so when I was back at work, I burned the candle at both ends. Which of course led to another flare, another hospital stay.My colleagues tried to rein me in, but I was angry. I was intent on continuing my previous activity rate, and my body was just going to have to get with the program.My version of the No-Matter-What rule of Academic Chronic Illness was that when you were back on your feet, no matter how wobbly, you put the pedal to the metal. No matter what.

Sadly, and as you might expect, bodies do not work that way. The boom-and-bust was a disaster for me. It was very hard on my colleagues.

It took me a few years to figure out--and then accept--what I needed to be and stay well. I need natural, non-processed foods, low-impact exercise, and lots of rest. Lots and lots. I can predict that a flare will happen after a day of extreme activity, or when I'm under stress. Other flares show up with no rhyme or reason. Most recently, a slight flu-ish feeling turned into a full-on bout of uncontrollable colitis, and boom - hospital stay. I wasn't badly stressed. I was excited about my new position, meeting new faculty, and teaching information literacy sessions. My diet has changed for the better, living in the land of produce. It was one of those run-of-the-mill "shit happens" (haha) type of things.

I was horrified. And terrified.

My colleagues made it crystal clear that my "catching up" by working 80 hours a week for the next few weeks was neither expected of me nor desirable to them. I was honest, I told them I felt guilty for being out during the busiest weeks of our semester. Colleagues had picked up teaching classes and covering desk time. I wanted them to know I could be a productive member of the team (and to be honest, did not want them to fire me after only arriving in July!), and I was terrified that I might have to go home early on the week I returned if I had a rough day. They were understanding, but firm: I was to do what I needed to make myself well. If I was too hurt or ill to work, I was to go home and rest. I was afraid to ask for it, but they gave me the permission I needed to take care of myself.

Not everyone has that flexibility, or colleagues that are so supportive. Last week was my first full week back. I'm still moving slightly more slowly than normal, but I've jumped right back into teaching classes, working the reference desk, and building relationships with faculty. Being social is part of my work, really--serendipitous meetings and social gatherings allow me to work my relationship-building mojo, and informal settings are a great foundation for friendships and "let's-do-coffees" that turn into great opportunities to help students. I choose which events to attend carefully, since I know I cannot do them all. I try to make it clear that it is not for lack of enthusiasm!

I've discovered that the No-Matter-What rule for Chronic Illness is different from the mom-version, which is, according to that Chronicle piece, work no matter what. Instead, for me, it is "take care of myself no matter what." If I don't, nothing else--including the work, or quality time with my husband--gets done.

It is a tough balance. I am terminally enthusiastic, and it is hard work for me to limit my engagements. I am much better about it than I used to be. I respect my colleagues and my loved ones, and to give them the best of myself, which is what they need from me, takes very careful work and decision-making on my part.

I am approaching the 3rd anniversary of my original diagnosis, and truly, it has taken me this long to figure things out. From what I have read and heard from friends, this is not uncommon--but I didn't know that until I started to read about living with chronic illness, and until I came out pretty publicly on my blog. Who knew there were so many of us?

And now I am dealing with something else the chronically ill are too familiar with, which is shifting diagnoses. Many autoimmune diseases mimic each other, but the best treatments can vary widely. My current rheumatologist fears I may have been misdiagnosed, and that it is not RA or AS, but fibromyalgia. I communicate some healthstuffs with my colleagues so that they know what to expect, which is my choice--many folks choose not to discuss it at work. Because I know that coming off of all my medications to get a baseline measure of how bad things are will result in my being a little wonky, and that starting new medications can be just as difficult, I try to let the folks I work with know enough so that they know what they can expect from me, and not to be surprised if I put in a request to not teach back-to-back on certain days. It's also a sort of heads-up to myself that my No-Matter-What coping skills will be tested, and may need to be altered.

When I started this position, I was chatting with Debi, my head of public services, and she admitted to a similar obsession for our work in information literacy--then she reminded me to get out and go home. "It'll kill you if you let it," she smiled. And it would, as I could happily work on instruction-related projects until my eyes fell out of my head. Going home, for me, becomes as important as going to work. It allows me to recharge, spend quality time with my husband, and rest this old creaky bod so that it will work for me the following day. I used to work quite a bit at night from home; now, it really is downtime, and I can enjoy it knowing that it serves me as a health measure.

A mother's No-Matter-What rule may be different, per the Chronicle, and gods bless any parent who can raise children and work full time anywhere, much less academia. Not all chronic illness sufferers will have the same No-Matter-What rule, though "saving spoons" (a euphemism for saving our sparse energy) is likely a major part of their decision-making, too. Do you have a No-Matter-What rule? Which of your priorities does it serve?