Wednesday, September 10, 2008

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!


  1. Amen, sister~ thank you for taking care of such a great gal!

  2. Thanks, Maria! At first I didn't know who you were talking about - and then I realized you were talking about me! Gosh, I can be really dense sometimes!

  3. Good job, Leslie! I'm glad you had a good experience with that professor and that assignment. Also, dropping that independent study, though difficult, was a really smart thing to do. I can't tell you how many times I've pushed myself past the point of no return, by (for example):

    A)taking on one too many classes (I do database instruction--I'm a librarian) or

    B)doing something for my daughter (going to take pictures at another one of her high school dances) when I had a screaming headache and

    A)someone else could've taught the class if I'd planned better, and

    B)her other parents (Dad & Stepmom) were already at the dance taking pictures, too.
    Sigh. Congratulations on managing your illness and on finding more allies! :-)

  4. Thanks, Sally! That was just a very small step in what is going to be a long and continuing process. But it does feel good. And it is nice to have others out there who understand so closely!