Monday, September 8, 2008

Looking The Part, Not Fitting In, And Feeling Invisible (A Pretty Poor Combo, I Agree)

The theme and timing of this post happens to correspond very well with National Invisible Chronic Illness Awareness Week, which is today, Monday, September 8, 2008 through Sunday, September 14, 2008.

Now, this post may not make total sense. It is an explosion of the events, feelings, and emotions of the past week, and for most of that time, I’ve been reeling and trying to come back to earth.


I don’t want to be over dramatic and say that Tuesday, my first day of my second year of graduate school, was the worst day of my life, but suffice it to say that much of what could go wrong in life… did.

I had a twelve-hour day looming in front of me, which I knew was going to be difficult for no other reason than the length of time spent outside of my apartment. But with people making me feel like a failure and rejections of all sorts flying at me from various directions, I pretty much went home and cried. It didn’t help that I had the worst headache that kept me up most of the night Monday and I ate far too little throughout Tuesday.

Tuesday morning, I had an 8 a.m. meeting, only to discover shortly afterward that there was an assignment for my night class due before the class met, that I hadn’t been notified about. So I spent two hours following the meeting feverishly trying to do the assignment. Not a good way to start off the school year, let me tell you.

And I discovered that my locked mailbox was so far above my head that I couldn’t even reach to get the key in. Now before you laugh, understand the fact that this isn’t funny. I went to my second class I was teaching, only to find that I couldn’t see into the window of the room to see if there was a class still there.

I am short in a tall world. I am sick in a healthy world.

And both of these make me virtually invisible.


Thursday was my first day of teaching and I was very nervous about how my students would react to me. After the way Tuesday went, I wasn’t feeling full of wisdom, ready to convince my students that I know how the world works.

And I still don’t feel full of promise and optimism about the year ahead as a student. One of my professors made me feel like a complete slacker. And I didn’t very much appreciate such an untrue insinuation. It reinforced to me the difficulties of having an invisible illness.

One of the first things we were taught at our teacher training was that we should never assume things about a student. And one thing I would never do as a teacher is deliberately call a student out in front of others for their shortcomings.

But this professor didn’t even bother to consider that there might be other things going on in my life that would have caused me to be behind others. Rather, she embarrassed me. And when I tried to vent to others about the experience, they couldn’t commiserate because it hadn’t happened to them.


I do constant battle with whether or not to disclose my illness. You have to remember… I started grad school a year ago illness free. This is the first full school year that I will spend with a diagnosis.

And I’m not sure how to broach the subject. I still can’t get passed the fact that I feel like disclosing seems like a plea for special treatment, which isn’t it at all. But when I’m totally stressed because my life is crazy and people are insensitive, my diseases inevitably flare.

And disclosure is made so difficult because I don’t look sick. But I’m not someone whose disease is under control. My medication is still not regulated and I’m not in “maintenance mode.” At the moment, my illnesses are still completely unpredictable, which makes life as a student, and now as a teacher, extremely difficult.

So, boys and girls, the lesson here is that, at least in academia, disclosure is not easy.

I’m at the point where I feel ready to snap. That at any moment, in the most unlikely of places, I will just scream at the top of my lungs, “I have lupus and rheumatoid arthritis. Chill out and leave me alone!”


Honestly, I feel like I’m drowning. I really am at my wits end that graduate students can only commiserate when something directly happens to them. The teacher doesn’t yell at them, so they can’t possibly understand what it’s like to be made to feel like less of a person. Have they never experienced that at all in life, I wonder?

It’s not even that my “friends” weren’t commiserating with my illness (most of them present in the “professor” situation don’t even know about it). It was that they weren’t even commiserating with me as a graduate student or more broadly, as a person.

The thing that I guess I should have realized a long time ago is that those most hardened to life do not aspire or are not allowed into careers in academia. The “Ivory Tower” is reserved for those who have mainly waltzed through life, unscathed by the less glamorous facets of what it means to be a human being.

On the one hand, I have become thankful that my illness has taught me how to be “universally” compassionate. On the other, I feel like I’m in a glass box, pounding to get out, while the whole world stands around pointing, having no idea what it’s like to be in my box and never bothering to stop and ask me what my life is like.

No one understands that things are twice as difficult for me. After just two days of class, I was asleep on my couch at 6:30 in the evening. I feel like I’m in way over my head here.


On the plus side, my first day of teaching went well. I like my students and am excited about teaching.

My students, at least out loud, didn’t question my ability to be their teacher. I dressed in a dressy skirt and nice top. When I looked at their faces, I saw how nervous they were and it calmed me down.

I was intrigued to see that on their information sheets, several students mentioned having chronic illnesses. Is it sad that I felt instant connection, an urge to reach out to them and tell them that I know what their lives are like?

Although in order to do so would require disclosure, and I’m not sure that would be entirely appropriate.


So much in life is about fitting in and looking the part. And I feel like for me, in some ways, that is the story of my life.

In order to convince my students that I am worthy of teaching them, I have to dress “up.” And I guess in some ways, I’m lucky there is such an easy fix to the situation as clothing.

Because as with my height and my illness, there aren’t such easy fixes to things that will forever be with me.

I might look like I belong in the pediatric ward, but I’m actually old enough to understand what all this illness stuff means for my life. And therefore, I don’t deserve to be treated like a child. Oh, the sick, sick irony of it all.


I’m not sure if I’ll get much more of a chance to blog during National Chronic Invisible Illness Awareness Week (although I think this post is just about long enough to be considered an entire weeks worth of posts anyway). In other words, I might just be invisible everywhere, including on my blog, as well. I’m being daft! You can tell me to shut up anytime!

I have the first meeting of my second night class, the hope that my first night class will go better than last week (because I really can’t imagine the possibility of it going any worse), my first real week of actual teaching, not just introductions and bureaucratic garbage, and the first real test of whether I’m actually up to the challenge of another year of graduate school with a big heaping portion of chronic illness on the side!

Although I’m going to try in my spare time (haha!) to catch at least one or two of the online conferences. And you should too! Here is the link to the conference schedule, from where you should be able to get to the actual conferences.


  1. Hang in there Leslie. After 8 years of Chronic Daily Migraine (I work at UM, too) I've learned that no one (work or family) "gets it", or really cares. You're on your own. Give yourself permission to dress up for class to feel better. Give yourself permission to crash at 6:30pm on the couch. Find out somehow about the assignment--get a jump on everyone else. No one cares about your diagnosis--the question is not whether to disclose or not, the question is whether you will give yourself permission to do everything you need to do to stay one step ahead of them while still taking care of yourself. Graduate students are only interested in themselves. Same with Professors. Same with most everybody else. Spouse, children, co-workers. They get TIRED of your disease really really quickly. Have compassion for yourself first... and don't ever depend on them to do you any favors unless you do them back. (You will have to save up reserves of energy to do them back.)This is just the way it is living with healthy people. This is just what I've found. We are invisible to them, and boring!

  2. I know where you're coming from, Leslie. I am a biology grad student with arthritis. I'm TAing microbiology this semester, an area far from my research area, and it never occurred to me just how much the stiffness in my hands would affect my ability to demonstrate techniques to them. It's really frustrating and I really don't want to explain to them my lack of dexterity. For now, I'm just making light of it and saying "My new rule is if you can do it better than I can you pass."

    Also, I have to stand up for the entire 2 hour lab, walking around and helping them with their stuff, while my hips grow stiffer and stiffer and my fatigue gets worse and worse. I can help. I can do it. But then I come home and collapse and wonder if I can do it again.

    Reading blogs by people like you going through similar things doesn't make it any easier, necessarily, but it makes it less lonely.

  3. Sally, thank you for your honest comment. I think in my head I agree with what you are saying, but my heart wants to believe that people are more compassionate than that. And I want to hope that I am more compassionate to others than they are to me.

  4. Liz, I think commiseration does help in some ways. Although it's also frustrating to know that there are others just like you and so little that any of us can do about it. I'm glad, though, to know that there are others who are trying to tackle as much as I am all while also dealing with severe chronic illness. Good luck TAing! Please keep me posted on how your semester goes! I'm sure I'll have plenty more stories to share about mine, also.

  5. Hi Leslie, Wow, what a week you've had...and what timing as an example of the challenges of invisible chronic illness!

    I want to comment on what stood out for me in this post. When your students disclosed to you that they have a chronic illness, you felt compassion. Your students are disclosing to you not knowing you have a chronic illness. (I bet you didn't think by disclosing that they were asking for special tx.). I wonder if you were to disclose to your teachers, you might find one now and then who is either chronically ill or has a family member or friend who is and "gets it". Just knowing one professor understands, might make your semester (and the incompassionate professors) more tolerable.

    I was a elementary school teacher before becoming ill. An advocate for the "invisibly" learning challenged, those whose disabilities greatly effected their performance in school but weren't eligible for special ed, described these kid's experience in the classroom as being in a race. The children without disabilities are racing on a flat track, while the kiddo with the learning disability is running up hill--yet they are racing each other. Not easy or fair. Sounds like since becoming ill, you have had to run up hill while your peers in grad school are running on the flatland. I think you are determined and brave! Kerry

  6. Hi Leslie,
    I was going to leave another comment that wasn't quite so negative, but Blogger was giving me trouble, so I gave up...(it started to make my head hurt, LOL.) It's not that these "healthy" people in our lives don't love, like and/or respect us, or feel any compassion for us, they do--it's just that they don't fundamentally understand and/or can't hold it in their minds/hearts for very long at a stretch (in my opinion & experience.)

    The point I was trying to make is that whether you disclose or not won't make much difference in the long run to Most People, but as someone else here said (I already forgot who--thanks to migraine preventative Topamax, i.e. Dopamax--there may be one or two with chronic illness who will be empathic, so maybe it IS worth it.)

    The main thing is not to be hard on YOURSELF. I was so hard on myself... I drove myself harder than anybody else did (and they cut me virtually no slack.) I waited for permission from everyone else to stop trying to be perfect, even though I was sick. I finally realized I had to give the myself that permission. It's something I'm still working on to this day. And you're so young, I just hope you can get started on it now; you have a long demanding (albeit exciting and fulfilling) career ahead of you in academia.

  7. Hi Kerry,
    Thank you for your comment. You definitely are right that I didn't feel that way about my students. I think, especially knowing the kind of person I am/going into the field I am, I hold myself to a much higher standard than I hold others or even than others hold me to. That said, I also think you are right about finding someone who does happen to get it. I actually told the professor I was teaching for, which was hard for me to do, but I didn't feel it was fair for me not to. And that person was incredibly sympathetic and told me that I should arrange back-ups to teach for me, in the case that I cannot, for whatever reason. I immediately launched into this whole thing about how that wasn't why I was disclosing and was immediately told that it is always good to have a "Plan B". Maybe I should have talked about this in my post, but there were other things I was concentrating on. But thank you for pointing out that, that one person really does make a difference! I really like the race metaphor. It's very fitting to my life! Thanks for sharing it with me!

  8. Sally,
    I really did appreciate your comment. Sometimes even if the commiseration is negative, it helps to know that we are not alone! Not being hard on myself is a constant struggle and something I'm really trying to work on. I feel like that's how I operate, that I've been conditioned to be the hardest on myself out of anyone! Any advice on this would be greatly appreciated.