Monday, November 10, 2008

Making The Choice And Facing The Consequences

One of the many choices we face, as chronically ill people, is whether we should or want to be labeled as such. I, personally, have had several experiences with this.

The first is, as I have mentioned several times before, that Doctor C was at first hesitant to provide me with a diagnosis because of not wanting to “label” me.

More recently, however, more labels have been tied to my person. I have joined the ranks of students with “disabilities.” Doctor C had to fill out the “chronic health conditions” verification form, which was submitted to the office that advocates for students with “disabilities.”

Don’t get me wrong here. I’m certainly appreciative of the help and support that I have received from these organizations. However, an issue that we talk about often – disclosure – really takes center stage here. Not only do I become a person with lupus and rheumatoid arthritis, I also become seen as being chronically ill and disabled.

Obviously, since I blog about my illnesses, I have accepted the label of being chronically ill. However, accepting these labels in the “institutional” setting makes them even more real than they were before.

And there are, of course, pros and cons to being seen this way. So maybe for those who wonder why I waited so long to ask for help (nearly a year and a half of being sick and six months after my diagnosis), can understand that being “out” about such issues is both a blessing and a curse.

When disclosing goes well, or you share in a “safe space” with like others, which rarely happens, it can feel like a weight has been lifted off of your shoulders. I, for one, struggle on a daily basis with the fact that so few of the people I am around most of the time have no idea what’s going on. It makes me feel like a fraud. It makes me feel like I really do have something to be ashamed of, that I actively have to hide and conceal my illnesses for fear of being exposed as what I truly am – sick – and all of the questions about my ability that comes with it.

And part of this feeling is based on the fact that my department has not been entirely (if at all) supportive of what has been going on. One of many questions I ask myself lately is - do I want to continue in a department that does not support my needs? Do I want to stay in graduate school?

I had another meeting this week, with a different person from a different office. The meeting, itself, went well, but I am not really sure what the status is of things at the moment.

And as I spent that meeting telling my story and contemplating my need for voice recognition software and a backpack on wheels, I realize that there are choices that have to be made. And they are no different than the ones I make on a daily basis.

Early on in this experience, I was playing the role of a rebellious teenager, thinking about the allure of defying medical authority by not taking my medication. There was no rationale behind this thought other than to “stick it” to someone. Now, however, there is the question of whether I am better off taking the medication or not. And while the answer seems like a simple one, it isn’t.

Next week, I have an appointment with Doctor C, and it is clear to me that some changes need to be made. But I also know, even before having the options in front of me, that the choice will not be an easy one, because there is always something to be gained and something to be lost in this process. For instance, given the choice of prednisone or not, would I go for the prednisone again?

These are tough questions. But there always have been and always will be tough questions. I think sometimes my friends get frustrated with my indecisiveness about little things, like where to study or where to eat, etc. But the truth is, it’s only because I have to face the tough questions and make decisions, that when it comes to the little ones, it honestly doesn’t matter all that much whether we go here as opposed to there.

You know, having to have answers to the tough questions, sometimes on the fly, is both physically and emotionally draining. And lately, I have not been good at deciding when to take a break. Last week was crazy busy – I can’t believe that my last post was nearly a week ago – but on the other hand, I’m not all that surprised.

On Saturday, it wasn’t until my cell phone started vibrating in the other room that I got out of bed. And on Sunday, it wasn’t until the obnoxiously loud bells from the church down the street ushered me out of bed. For once, isolation was nice. The people that needed me or wanted to see me or talk, called or e-mailed me. I wasn’t rushing out to go anywhere, mainly because I didn’t have the energy to do so.

And Saturday was one of the most productive days I’ve had in a long time. But no matter how relaxed or “normal” things can seem, there are always reminders. I met some friends for brunch yesterday morning to celebrate one of the friends birthday’s. It was a pretty long walk and really cold out. By the time I got home, I was exhausted. So I fell asleep on the couch at about three in the afternoon. And while you might want to say, “But Leslie, there are people in the world who nap who don’t have chronic illnesses,” that’s true. But this is all relative. And I never was much of a napper before the chronic illness stage of my life.

There are many mornings where I stare at the prescription bottles lined up on the counter and think about how much easier life would be without them. On the other hand, I know if I take the cellcept more than three hours later than my usual time, I will end up with one of the worst headaches imaginable. The back of my head will pound and it will feel like my brain is going to explode.

So there are many choices that have to me made. And some are easier than others. Do I disclose and risk losing everything or do I stay silent and risk losing everything? Do I take my medication or do I tempt fate? Do I go to a get-together or do I stay in bed? Do I put on a brave face for nearly everyone in my life, when really, I’m in pain?

Yes, there are always tough questions. But it’s about opportunity cost, about calculating the risk and the reward. But sometimes, we don’t have the time or energy to consider the opportunity cost. And sometimes we don’t have the energy to think that hard and over-analyze everything (as some of us are wont to do).


  1. Dear Leslie,
    I've been working many many years with chronic migraines and I can say that my workplace is not patient with my doctor's appointments or leaving early because of a migraine or even because of family emergencies. The tolerance for chronic illness is quite low. I am expected to be at work and if I am not there others are irritated, no matter the reason. It has come back to me in a negative manner and now I have to be more careful and more vigilant. I think managing chronic illness in professional settings is challenging. Where I am there is no patience for it. Jeselle

  2. Dear Leslie, Yes, I think that you should stay in this department regardless of whether they "seem" to support your needs. You can and will continue to explain what they are and to expect them to be met. Only with this attitude will you get what you want and deserve. This is an ideal place for you to push for this and this will give you the confidence in your ability to do so that you'll need when you meet an even more difficult work world.

    Warmly and with support, Rosalind

  3. Leslie,

    I don't have a proper e-mail address for you for some reason. I wanted to let you know I have awarded your blog the Lemanade award! It is for those who choose to find the positive in things. Please come to my blog to read about it and to pick up your award.

    Thanks for continuing to be an inspiration to me!


  4. "Do I disclose and risk losing everything or do I stay silent and risk losing everything?"

    I am in that boat a lot too! It just all depends on the people I am with and what kind of vibes they are giving me.