Monday, October 13, 2008


I haven’t had a substantive post in nearly a week, which is a long time for me. I’ve been working through a lot and trying to make sense of myself and the world around me.

I’ve been trying to make sense of the misunderstanding that occurs due to illness and I’ve begun to realize where the roads for healthy and sick people diverge.

When I began this process a little over a year ago, the end goal for me was to have a diagnosis. I convinced myself that along with a diagnosis would come some kind of inner calm. I would no longer have the panic attacks in the middle of my theory class that I concealed regarding if this was the last night of my life, is this really how I would want to be spending it? Because at that time, there was so much unknown. And while a diagnosis isn’t the only thing that makes an illness real, there is no less uncertainty that comes once you have a label to pin on yourself.

I realized that my world changed when I received my diagnoses in a way that can only happen if you are ill. It was like when I left the hospital, my world had completely changed, but everything around me moved the same way that it always had. In other words, I changed, but nothing and no one else had. While I was seeing the world in a new way, with new eyes, everyone else viewed me (and the world, my world) as they always had.

So how does one cope with a world that is only different to you?

Some people find it difficult to face the truth ever. I am forced to face the truth about my life and my future everyday. So if that breeds jealousy, envy, or resentment, I’m only half sorry. Because I didn’t ask to be here. And in a million years, I would change things if I could.

I feel like something people don’t understand is that I’m not making an excuse, I’m providing an explanation. The thing I keep trying to convince myself is that my super human powers of working myself to no end can no longer be. I keep trying to take my mom’s advice to heart that my 100% is everyone else’s 75%, so when I’m working at 75%, it’s like I’m still at 100%. Does that make sense? It does to me, although it’s hard to believe.

But the truth is, sooner rather than later, I have to acknowledge my illnesses as a real part of my life and what they mean for my future. In order to do that, though, I also need those around me to acknowledge it, as well. I need to be able to say and do things without people asking questions or getting angry or frustrated. I need to stop fooling myself into believing that I’m the same person I was before all this and that I can do the same things I did before. Because I’m not and I can’t. And maybe those who were in my life before all this don’t like the person I’ve become. And that’s okay. I don’t always like me, either. But I’m trying to work through that. And I’m trying not to be a poor me, always dejected kind of person, but that’s a little hard when I never know exactly how I am going to feel.

Talking to one of my friends the other day, she mentioned that she was having side effects from a medication she is on and that with aching joints and muscles nearly constantly, she kept telling those around her that she understood what I must go through. And she can’t imagine feeling that way for an indefinite amount of time.

And it’s funny because that question has been posed to me several times recently by outside observers.

How does it feel to have to deal with all of this forever?

Do you ever consider that question?

Um, let’s see. How does it feel? Pretty shitty, actually.

And do I consider that question? Only multiple times a day.

I have been struggling with Doctor C’s order of a restricted schedule. I truly have been trying. The reason that I haven’t been succeeding is because a 10 p.m. “bedtime” assumes that my life takes place in a vacuum and that nothing will happen that will send me into a tailspin or send me into hours worth or analyzing and re-analyzing a given situation. I have made an effort to get no less than eight hours of sleep a night and that does seem to be working, although the benefits to my physical and emotional self are still questionable (at best).

As of late, I’ve really been feeling beaten down emotionally. The meanness makes me cry and lately so does the kindness, because it is such a rare occurrence to have someone listen and attempt to understand who isn’t required to do so.

It’s funny how the way we see ourselves and how others view us can be completely different. Lately I feel like my emotions are all over the place and my life is spinning out of control. I’ve been seriously considering the pros and cons of leaving graduate school. And yet, through all of that, at every turn people are telling me how impressed they are by my work and my fortitude and my togetherness. And my response is that I want to laugh. Are they really serious? Are they really talking about me? It’s only a matter of time before they talk to this one or that one, who will certainly set them straight about the truth about me. But it also made me realize that lately I’ve only been able to focus in on the negative comments and interactions that take place with those around me.

The other day, for instance, the professor I teach for asked a question in lecture. One of my students answered with a nearly verbatim response of what I had taught earlier that day. The professor commended the student on the answer, but suggested the student must have had helped and asked who the student’s GSI was? The student promptly told the professor that I was his GSI. In the moment, I felt like I was being singled out. I felt stressed and anxious about the implications of the situation. But as I shared the account with others, they made me realize that this was truly a good thing. My student not only knew my name, but actually absorbed the information I had taught, the professor saw what I’m teaching, and my students are now more aware than ever that I actually do know what I’m talking about.

So I know this is a lot to process and it’s probably not my most cogent post ever. But I’ve been too emotionally full to attempt to unload until now.

(P.S. I don’t have to follow the 10 p.m. bed rule on days where I have my evening classes, hence why this post is being written and posted at this time!)

(P.P.S. No, I couldn’t come up with a more creative title for this post. I’m running on very little right now and it says what it is supposed to say!)


  1. Leslie,

    it sounds like you are very stressed out. I can totally relate to analyzing and re-analyzing a situation for hours, and having that interfere with bedtime, and of feeling beaten down. I do the same things.

    Have you considered counseling? I do not say this lightly. I have a chronic illness myself, and I understand how it feels to add yet another treatment to a list of your things to do. You may be in a completely wrong time and place for it.

    But here's what happened to me in the past. I wasn't chronically ill at that point, but I had a recurrent problem which forced me to have 4 surgeries, and left me very uncertain about my future. Together with the stress of grad school, it sent me into a downward spiral - I had trouble sleeping, then had trouble fulfilling my commitments, got even more stressed over not working my 100%, got even more trouble sleeping, etc.

    At that point an insightful friend suggested that I should try counseling as a neutral place to unload my emotions, since I wasn't having much luck with family and friends. I was very lucky indeed - I went to the counseling service at my university, it was free, and I hit it off with the first therapist that I met. It helped me enormously.

    First of all, I had a safe place to analyze my emotions and, most importantly, come up with productive solutions. The therapist didn't advise me at all - I found that really talking through it, with an impartial observer who wasn't affected by my situation, released something with me and I found better ways to cope, and, eventually, confidence in myself.

    Second, while my illness certainly was a huge part of what was going on with me, and would have impacted anyone, the truth was that it "fed" on some unhealthy coping patterns I had learned in the past. This is not to say that illness was unimportant - but it just really made worse small behaviors that wouldn't have impacted my life if I wasn't under such major pressure, and magnified them to the point when they became a problem.

    I most senses, I think I was unusually lucky. I was physically fit when I went through therapy, and I dind't have to worry about schedules and fatigue. I am considering doing it again at present, because my current chronic condition is making me overstressed again, and I worry about going into this kind of downward spiral yet again. But it's so much more difficult to commit to it now that I have limited energy. So this is why I am saying that this is not a suggestion I am making lightly. But I am eternally grateful to my friend who suggested it at a time, because I think I would have failed grad school, and worse, if I hadn't gone to counseling. So I wanted to share my story.

    I hope you things get better for you, and you find your own solutions.

  2. Mary, I appreciate you sharing your story with me. My university has something similar to what you describe. I think, though, that as someone who has been in graduate school, you can also relate to the fact that in some ways, we have been "conditioned" not to show emotion or ask for help. So this is not an excuse for me letting things get the way they are, but there are some reasons behind it.

  3. Oh, yes. I can very much relate, both to not showing emotion and not asking for help. After all the therapy, 3 years of being "officially" chronically ill, and 3 years of various ongoing problems before that, I am still struggling with this. Opening up (especially in terms of asking for help, which means admitting that one is not managing something by yourself) makes you vulnerable. And I would have to add, my other huge stroke of luck was the therapist - not everyone finds a good one on the first try, which can mean extra pain when stress is already high.

    That's the catch-22 of anything related to stress and depression, though. A friend who learned about my struggles some time later (I was amazingly good at covering it all up for everyone but people who worked with me daily), said "You should have called me if you felt so bad. I would have been happy to help". Yes, right. Except that me being so stressed meant that it was 10 times as difficult to ask for help.

    And I think this relates to being with chronic illness, too. I don't mean counseling specifically - any help in general, I find it's harder to ask, because "will people think that I am unable to do my job?" I am blessed with people in my life who make it easy. And yes, it is in academia ;-) I hope you find such sources of help, too