Wednesday, September 24, 2008

Academics and Nurses and Rheumatologists, Oh My!

I’ve been thinking and ruminating over a lot lately and these issues fall into three categories, hence the title – academics, nurses, and rheumatologists – the reasons for which I am about to make clear.

Let’s start with academics…

Now with teaching and everything, I’m spending a lot of time “in” the department, meaning that I’m around people in my department a lot more often than I was before. And honestly, I kind of wish I wasn’t. Spending time around these people kind of makes me crazy.

I’m finding myself needing to spend a lot more time in the computer lab. And all the while during these proverbial cram sessions, which by the way, seem to be happening more and more frequently as of late, I’m not thinking about the next great paper I may attempt to write. I’m thinking about my fingers and how important they are to me and how I need to preserve them. If you were to ask my student colleagues if such a thought ever crossed their minds, no doubt they would tell you those kinds of thoughts are "for old people" and shoo you away with a flap of their hand.

No, academia is not a high endurance career in that it doesn’t involve running actual hurdles on a daily basis. But there are certainly plenty of professional hurdles, plus little sleep and lots of coffee. The truth is, though, academia is taxing on the brain, because as those of us in the field know, we are always “on the think”. And you know what? Taxing ones brain all the time is just plain exhausting.

So, in my awful class, several people started talking about being sick or having been sick (we’re talking colds, flu, etc. – “normal” illnesses) and how hard it is to drag yourself out of bed to go to class when you’re sick…

Well, welcome to my flipping everyday. And nobody asks me how I’m feeling…

This is really the first time that I have seriously considered putting at least a hiatus on my graduate career. There are definitely people who don’t feel I measure up, and I’m starting to wonder if they might be right.

My work card is full and my dance card is empty. It’s difficult to socialize with people that might as well be from another planet. We might “live” in the same department, but our experiences are completely different. It’s hard to be in a world where work is the end-all, when to me, there are more important things in life. Certainly, my research is important to me. But in truth, my life is about telling the untold stories. It’s something I have done for a long time and will continue to do, regardless of whether I have three letters after my name telling me that I can, in the name of “science”, in the name of “progress”.

I don’t feel very much like I’m responsible for creating new knowledge. My advisor told me recently that she believes my work has the potential to be “culture transforming”. But if everyone chooses to ignore it, does it really exist? That’s how I feel right now, that I am always doing battle to be seen and heard. For my colleagues, my illness doesn’t exist because they cannot see it. I don’t walk around bent over, using a cane, or even holding my head crying out in pain. Because even if I was bleeding out my eyes, would they care?

At some point, I am going to have to fill out some bureaucratic paperwork that acknowledges that I’m sick. The reason for this is the following:

About the fact that at the end of the summer of 2009 I will have to embark on an eight-hour exam… all essays on the computer. Why stress about something that is nearly a year away? Um, I have lupus and rheumatoid arthritis, people, I don’t see how typing for eight hours is even humanly possible for me anymore. My fingers are starting to hurt already, just typing this paragraph of post.

But then I’m forced to wonder – what kind of limitations do I have? Are they real or imagined? These forms are designed for people who have clear, visible limitations. Not, it’s pretty f***ing hard for me to take a night class because not only do I not get my afternoon nap in, it screws up my entire schedule. But nobody thinks to care about that. Or the fact that situations can simply be overtaxing.

The other thing about documentation is that having this stuff on file with my department makes it real – to others and to myself. Having an invisible illness is both a blessing and a curse…

Now on to nurses…

So let me share another experience that I had yesterday, which I found to be most infuriating. I called my dermatologist, who I haven’t been to in several years, because I wanted to find out if there was anything that could be done about my residual prednisone acne. Before I went through the hassle of making an appointment to see my PCP, asking for a referral, and then attempting to get an appointment with the dermatologist, I figured I would try and explain the situation first, so if there was nothing that could be done (which I suspect may be the case), I didn’t have to go through all that plus pay a co-pay only to be told that I just have to deal.

So I called the office and asked the nurse if I could leave a message for my doctor. Word to the wise – verbal messages are never good. Period. Anyway, I digress. So I explained briefly the situation and was told that if it is something that “is bothering me”, I should just come in and that she wouldn’t pass the message on to my doctor. Then she proceeded to school me in the “complicated” ways of HMOs and how confusing the whole process can be. Yeah, thanks to people like her!

But it was clear on the phone that she was talking down to me, did not think that my problem was worth her time, and really, being just plain rude. I called to talk to my doctor, not some nurse on a power trip. Now, I don’t mean any disrespect to nurses, in general. But this particular one? Was that treatment really necessary?

It seems like people really want to pick a fight with me lately. And while last week, emotionally, I was all for it, this week those who have tried to make me feel small have succeeded in doing so. Big Time Smallness right here!

Why is it that some people need to make others feel small in order to feel good about themselves? Lately, I’m encountering more and more people who really get sick pleasure from making others feel worthless.

And as much as I would like to say that I am a much stronger person than allowing myself to be made to feel that way, sometimes it’s unavoidable. Sometimes the hurt caused by others is just too deep to shrug off.

And finally… rheumatologists…

With the way I’ve been feeling about things lately, this is what I wanted to say to Doctor C: “You went to med school, so you know what a rigorous academic environment is like. Add to that all my medical crap… how do you think I feel right now?”

Filter, filter, filter. Yep, that’s me. I just wish I wasn’t getting mixed signals from everybody all the time. It’s like, it’s bad to hold everything in. But the minute I start saying how I feel about things, people are like, okay, too much.

So what the heck am I supposed to do?

But it’s funny. I didn’t say that to Doctor C, but the conversation we had seemed to make apparent, that somehow, there was some recognition.

That said, there aren’t really any humorous tales from today’s rheum appointment. Sitting in waiting room full of people at least twice my age, seven tubes of blood, and three urine samples later, suffice it to say that I’m feeling even more physically and emotionally drained than I was before.

I think that the clear issue that came out of the appointment is the fact that emotionally, things are not going well. It’s no secret that I’ve been down lately – more down than normal. I find myself wanting to cry a lot.

I didn’t tell Doctor C this, but the questions were asked approximated… dare I say… humanity?

Doctor C asked about school, how many classes I’m taking, etc. I explained that in order to be teaching, which I basically have to do to stay in school, I have to be taking the amount of credits that I am. I mentioned my awful class/professor and the short version of the story. Doctor C’s response was that, that was bureaucracy at its best – good old U of M. But Doctor C (other than my parents) has really been the first one to acknowledge that and the fact that it’s damaging to students, namely me.

(Eventually I will have to confront this professor. But I don’t want to do it until I can remain fairly unemotional. And that isn’t going to happen anytime soon).

Doctor C talked a lot about how difficult it can be making people understand what it’s like when you don’t look sick. Where is this coming from? I was never expecting to have such a conversation with my rheumatologist, who until that point made me feel like I should just get over myself. I was never expecting to connect with the one person in my life who I really thought wasn’t on my side. Doctor C told me that I shouldn’t feel brought down by others just because I’m sick and offered to contact my advisor.

The prednisone issue came up again. Doctor C asked again if I wanted to go back on it. Honestly, it was almost a tempting offer. But I said no.

Doctor C thinks I need to get back to a more regimented schedule in terms of sleeping (in bed by 10 p.m.?), eating (actually making time to do so…), and medication. I completely agree (see my post on self-care). But it’s incredibly hard to do that in this kind of environment. Doctor C told me that even if to justify it to myself I have to tell people I can’t do things because of “doctor’s orders”, then that’s what I have to do.

But I know that no matter what, someone is going to be let down, whether that be my family, my friends, my doctor, my department, or myself. I’m never going to be able to please everyone and take care of myself at the same time…

The appointment really left me feeling emotionally drained and vulnerable. How is it possible to be fully clothed, feel naked, and yet know that people are looking completely through you?

Eleanor Roosevelt said famously, “No one can make you feel inferior without your consent” (I quoted that from memory… and was right…). I don’t recall ever giving people permission to make me feel like shit about myself. But then again, I do let them get away with doing it.

I don’t often cry when I write posts. But suffice it to say that there have been many tears today.

Well… my students have an exam tomorrow and I have to finish grading their papers. I’m up at 6 a.m. tomorrow to teach. Let the regimented schedule (sort of) commence (sort of)…


  1. I don't know how you will manage to balance all of the things you are trying to do. But you are at the beginning of the RA path and it may get better, but there are choices you may be making that will affect your future. I'm thinking purely of joints and bones here.
    When I was just diagnosed I pushed myself to take care of kids, keep working and cope with RA. Now I wish I had done more to make sure I did not develop damage to the joints because after there is damage things tend to deteriorate over time. It's slow but life is often long. Also it is far more common in RA to develop osteoporosis. I wish my doctors back then had said that I should take calcium and vitamin D. And I would have done something to stay stronger.
    But the treatments are so much more varied and effective now that you should do well.
    I hope you can manage to follow some of the Drs advice. It makes sense.
    I take a biologic now and it has helped a lot, and even with having had RA so long I have still managed to keep working full time

  2. Hi Annette,
    Thanks for your comment and advice. I apologize that you had to slog through the world's longest post!

  3. hi leslie,

    i happened across this blog from your facebook page - i had no idea you were dealing with all of this stuff. i know i don't know you very well but please let me know if i can ever do anything to help make things easier. my brother has a chronic illness so i sort of understand some of what you are going through.

    talk to you soon,
    jess wiederspan

  4. Hi Jess,
    Thanks for your comment! I've further responded to you via your umich account. I guess it just goes to show how few people actually read what's on your facebook page! :)

  5. When I went in to take my finals last semester, I had the problem with the essay test. She handed me this booklet and it was nothing but blank pages. We were expected to write three pages for every question. By the time I finished, I could not feel my fingers and they were completely crippled up in strange forms. So, I can relate to what you are saying. I wonder if you could get any help out of those computer things that you talk into and it types for you. I'm sorry, I don't know any technical terms for the stuff. Just a thought...
    This is solaroil, by the way. I forgot my password so I'm anonymous!