Sunday, July 27, 2008

Forced Disclosure And The Battle Within

I know I’ve been delinquent about posting this week. It has been a busy week and one that today made me regret. It was a week full of too many long days and late nights and I slept most of today as a result.

Part of the difficulty of this week was the emotional battles that raged inside me.

As I’ve mentioned before, I’m going to be a graduate student instructor (GSI) starting in the fall. This means 20 hours of work per week plus my own classes. But most of all, it means having to constantly deal with other people who probably won’t understand my health situation. The other GSIs and I received an e-mail last week that we needed to decide amongst ourselves the sections we are going to teach.

Simple right? Not even close. It was one of the most stressful situations I’ve experienced in awhile.

I was the second person to e-mail my choices; either two early Thursday or Friday sections. I opted not to teach the Wednesday sections because I only ever have doctors appointments on Wednesdays and there is no way I would be able to conceivably fit that all in, in one day, considering that doctors appointments on the “good” days take at least two hours (by the time I leave home and get back). And I knew that I wouldn’t be able to physically handle teaching two evening sections in a row, either.

I wasn’t trying to use my illnesses as an excuse to get out of things. I was being honest with myself. Why would I commit to doing something that I know I physically can’t handle doing?

Well, these explanations apparently weren’t good enough for my fellow teachers. There were some heated e-mail exchanges that followed. I said that I was willing to teach two late sections, as long as they weren’t back to back, but apparently this wasn’t enough compromise coming from the only person who was willing to make concessions. The one concession I wasn’t willing to make, however, was my health.

In the end it did get worked out, but it was incredibly frustrating. When I sent my choices, I indicated that my reasoning for picking the times I did were for doctors’ appointments and health reasons. I didn’t feel that any of the people I was communicating with needed or deserved any more information than that. And I stand by that decision.

However, it made me realize that now I probably have to explain what has been going on to the professor I’ll be teaching for. I had been contemplating this and hadn’t come to a firm decision on whether or not to have this discussion. But this whole scheduling fiasco made me realize that my having lupus and rheumatoid arthritis is probably something I should disclose.

I don’t necessarily think it’s fair, though. I feel that I wouldn’t necessarily have to disclose to this person if it weren’t for the fact that I’m surrounded by a bunch of graduate students who can see no further than themselves.

I know that sounds harsh, but other experiences this week made me realize that people, in general, are unfeeling and uncaring. People can just be plain mean. I think I’ve always known this, but lately, meanness seems to be out in full force.

On Tuesday, I’m giving my first professional presentation as a graduate student. As I’ve said before, very few people in my department or in my internship program knows what has been going on. And this presentation has the potential to “out” me. The presentation is on chronic illness, stress, and self-esteem and self-efficacy. In the presentation, I explain why studying chronic illness is important, but there is the potential that someone in the audience may ask why it is important to me.

It’s one thing for people to stumble across my blog and find out what’s going on. That is a risk that I am obviously willing to take. But this whole issue of forced disclosure just doesn’t sit well with me. I don’t like being put in the position where, it’s not my intention to disclose, but I am forced to.

A situation like this happened earlier this year, long before I had started blogging or even knew what was wrong with me. I had signed up to do some publicity for a departmental event. After I had finished everything I was supposed to do, I was told that details of the event had changed and everything I had done needed to be redone. I had told the person in charge (a fellow grad student) that I couldn’t do it. I was then told that I would have to e-mail all of the grad students in my year to find someone else to do it. So I had to send an e-mail out explaining that “for health reasons,” I needed someone to take over for me. It’s not like I had gone back on my word and not done something I said I would do. I had done my part.

The thing is, I don’t think that if I came right out and said “I have lupus and rheumatoid arthritis” that it would really make any difference to the situation. In fact, I think it would make things more awkward. Most people aren’t going to understand the significance of those illnesses, especially if they don’t understand the significance of health issues, reasons, etc.

In the teaching situation, no one had any problem offering up their issues and excuses, but no one stopped to consider the significance of mine. This is something that I face continually. I am supposed to care about everyone else’s “stuff” when no one bothers to care about mine.

While everyone else is busy looking out for themselves, it’s time I started doing the same thing for myself…


  1. I can empathize with you on this post. You have to remember the society we live in is very self-serving and will only change when there is a forced outcry to do so. Empathy and consideration and compassion are hard to find nowadays.

    BTW, love the blog, hope you don't mind if I add you to my blogroll so I can keep up. You have a very talented way of expressing yourself!

    Sending blessings and hugs (gently) and hope that things look up for you soon!


  2. Hi Michelle,
    Thanks for your comment and thoughts! I appreciate the add!

  3. I very much sympathize with your post - it must have been an awful situation. And yet - and I have spent some time chronically ill - you do have to disclose, both to your fellow grad students who teach this class, and to your professor. I have been to grad school, and I am now in academia. It's true in my job, and I think it would be true in an industry job. The truth is, our limitations may affect our ability to do our jobs, and require accommodation from other people. There are likely to be other situations when problems come up - a very tight grading deadline. What happens if you have to push through but you are sick at the time? Someone needs a substitute for their session, but you cannot do it. If people don't know your situation, they may feel that you are not a team player. Unfair, true, and I have certainly been angry at certain people in my life who hadn't really heard when I said "I cannot".

    But I found that clear communication, up front, works best. I have a spiel that I customize to specific situations. "I have a chronic joint problem that imposes some limitations on what I can do. I can do everything that is needed in my job, and I will do my best to make sure that it won't impact anyone else. But it affects me and I need some help. If I have to stay for longer than 8 hours at work, I can get a lot of pain. So I need warning of impeding deadlines, and I may have difficulty scheduling things at the last moment. Sitting in non-ergonimic chairs causes me trouble, so we will need to find an office chair for the meeting room where we hold meetings" etc. People need reassurance that they won't be stuck with extra work when they have problems of their own to face.

    The interesting bit here is that I personally cannot even say what I have - it's chronic pain from a cause no one can diagnose that is pretty disabling. But I found that generally people are happy with a vague "chronic joint problem", and they react well if I tell them in advance what my limitations are.

    Not that I never met someone that just wouldn't hear no matter what. It sounds like you are against some of those there. I hope your professor reacts well. The hardest thing ever was to tell my boss when I realized that I just wasn't managing anymore on the same level as I used to, but when I came out with it, she was very supportive, and that gave me an immense confidence boost. Good luck with your course and sorting it out.

  4. Wow, Mary! I really, truly appreciate your post. And I think that what you say is true - disclosure is necessary. I just don't like feeling forced into it. I have experienced enough lack of control lately. But in the end, I know you are right. I just worry that even when I do disclose, people still won't understand. A lot of it has to do with "looking" fairly healthy and being in an environment where a lot of people just don't get it and they don't want to.

  5. Oh Leslie, I so empathize with you on this. Disclosure is something I struggle with constantly. I'm not currently in academia (though I have plans to go back to grad school), but I face a lot of the same issues at work. I'm expected to let my team know when I will be deviating from my normal work hours, which means I have to notify them of my doctors' appointments. I don't have as many now, but last fall when I was doing acupuncture, I had 2-3 appointments per week, so I missed a lot of work.

    Like you, I struggle with a very misunderstood illness. (Though you could say all chronic illness, especially the invisible kind, is understood.) When I say "Migraine", most people hear "headache". Oh, I've had headaches before. Can't you just take some Advil? No, I can't. And no, mine don't go away, ever. The pain is constant. *You* try working when you can barely think or see straight.

    Society is not understanding. People are not understanding, especially if your (my) need for accommodation will directly impact them.

    I wish I had a good answer to this problem, but I don't. I try to tell as little as possible, but then I end up in a forced disclosure situation that is just bad no matter which way you look at it.

    I wish you the best of luck navigating the GSI world.