We Might Be Invisible... But We Have Each Other!

Okay, so first let me say that I know how cheesy the title of this post sounds.

But in all reality, this National Invisible Chronic Illness Awareness Week has made me realize the wonderful support system that I have, even if, for the most part, it is a “virtual” one.

I think more than anything, this week has really helped me flesh out who I can truly consider to be a support and whom I cannot. And I think this exercise in self-exploration has been useful in many, many ways.

I’ve started to realize how negativity – people who are rude and outright mean – can really bring a person down (namely, me).

This has been a crazy week, and despite early victories, has probably not come down on my side of the scoreboard. I’m not sure how I feel about this at the moment…

I think I’ve also realized that I am only going to bring to the table/relationships what others bring. I’m really sick and tired of being nice to everyone and being kicked in the butt anyway.

I’m am truly grateful for all of the wonderful people I’ve met during my time so far as a chronic illness blogger. The support, concern, compassion, and commiseration are much appreciated!

Maybe someday I’ll actually get to meet some of you in person (even though you already know what my face looks like)!

So, I hope you all had an introspective National Invisible Chronic Illness Awareness week. For me, it was the first of many to come.

On that note, I want to thank those that have been there for me since I joined this community. It’s funny, I think, or maybe ironic is a better word, that we all joined this community unwillingly, but have really come to embrace each other.

I’m not going to name names because the way things have been going lately, I’ll most likely forget someone, but you know who you are. And it goes without saying that I thank my non-virtual family and friends who have and continue to stand by and support me.

Even Though You’re Invisible, You Still Need To Be Honest With Yourself!

Many of us out there are suffering from invisible illnesses, which, aside from the illnesses, themselves, make our lives more difficult in dealing with others.

I, as many of you know, have and continue to struggle with many of the people around me. I think it is important to remember that even though others refuse to acknowledge or understand your illness or what it means for your life, it is still important for us to acknowledge what our illnesses mean for ourselves.

For me, this has meant over the past week evaluating my priorities and what I absolutely have to do this semester to fulfill the requirements of my education, while at the same time, taking care of me.

The past week has meant reevaluating many of the trajectories I’m on and what kind of person I want to be, which, of course, includes the person that I am with lupus and rheumatoid arthritis.

After attending the first meeting of my second night class, which I love, I have decided that despite the difficulties this is going to bring, I am going to stick with having two night classes in a row – one from 6 to 9 p.m. on Mondays and one from 5 to 8 p.m. on Tuesdays. Plus, I have teaching and all of the various work that goes along with that.

This means, however, that I will most likely be dropping my independent study with my advisor. It’s hard for me to admit that I can’t do everything that I want to do, but that is the reality of my situation.

Now, I am by no means a poster child for listening to myself. But I think the first step in anything is admitting that you know you have things you need to work on. While I will probably, inevitably end up overloading my schedule anyway, at least I have admitted that I know I can’t do everything that I want to do – even when I am being pulled in a thousand different directions and want to make everyone happy and proud of me.

I guess I still have to get over that hump of listening to others and drooling over the lists of things they are doing. It’s hard when there aren’t others around like us and the people that are around, for the most part, completely do not understand. It becomes very easy, even for us, I think, to push our own needs out of the picture. If other people say we don’t matter, then of course, the logical conclusion is that we don’t matter. But this is not true at all!

And I think it’s deceptively simple to say that in the search for understanding, it is always ourselves that have to come to an understanding first, before we can get others to understand, as well. I think it’s really true, though. If I’m not honest with myself about what I can do, I won’t be honest with others, and in the end, I will end up letting both others and myself down in the process.

I want to share the following two stories that have really influenced the writing of this post:

1. While I was busy complaining about the “horrors” of last week, someone reminded me that there will be moments when, surprise!, someone attempts to understand our situation. At my 8 a.m. meeting last Tuesday, I knew that I was going to have to disclose my illnesses to the professor that I’m teaching for. I knew it wouldn’t be fair in the event that I am unable to complete my commitments as a GSI, not to tell the professor what has been going on. While I waited until after the meeting to tell this person, I was provided the perfect opportunity in which to do so. The professor was talking about how issues should be brought up as they arise. Then he mentioned that one of student (a male) last semester was diagnosed with lupus. So, after the meeting had dispersed, I mentioned to the professor that I had to discuss something, and basically started out the conversation with, “It’s funny that you mentioned lupus…”

2. In my last post, I also mentioned the negative experience had in my first class last week, where I really felt put down and disrespected. There is a lot of back-story to the class, professor, etc., and I’ll be happy to share more with those interested, but don’t feel exactly comfortable posting it all here. Anyway, we had a writing assignment due this week, which was to take an introspective look at our research for the class. And boy did I ever. I basically came home and started writing, even before we got the assignment. In so many words or less, I talked about how I was sick of not being taken seriously as a person or a scholar, the challenges I face studying the people that I do, and vaguely about how I had managed to push through, despite my illnesses, and this still wasn’t seen as enough. While I didn’t know how this would be received, I honestly didn’t care. I was feeling hurt and rejected, and the assignment provided the perfect opportunity for me to get what I was feeling off my chest in a way that didn’t seem out of place. And I don’t think I ever would have had the nerve to confront the professor in person about how I had been made to feel.

But at the core of these two situations is that I stuck with my intuition. I trusted myself that these were the right actions to take for the circumstances I was faced with. And in being honest with myself, in turn, I was honest to others, as well. And for what feels like the first time in a long time, I ended up being right, and ended up doing something good for me.

And you know what? That feels great. And I think people are starting to notice me! So in some ways, our invisibility breeds our silence and vice versa. And when we push against that, sometimes, good things actually do come out of it!

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.

A Note About National Invisible Chronic Illness Awareness Week

This year, National Invisible Chronic Illness Awareness Week is being held September 8, 2008 to September 14, 2008.

When you have time, make sure to check out the site, www.invisibleillness.wordpress.com. There is tons of great information and resources there.

There are also a lot of moving stories from those who have or have been touched by chronic illness. I have been featured as a guest blogger on the site. You can check out my entry, “Unlikely Chameleons”, here. (Sorry, that entry has not and will not appear on my blog. You’ll have to visit the Invisible Illness site to read it! (And please do))