Friday, May 1, 2009

The Struggle For Recognition

On the journey that is chronic illness, there are many struggles to be had. To me, the two biggest are the hard-won battles against ourselves and others.

I have been fighting with myself for over a year now, trying to make myself understand and recognize the fact that I am sick, that my life is different than it was pre-illness, and that it has to be that way if I am going to survive. This hasn’t been an easy task. But recently, I’ve forced myself to take part in activities that are illness related.

I was told at a meeting recently that for all intents and purposes, I could go without disclosing my illnesses if I really wanted to. And while that is true, and appealing in many ways, it seems wrong to simply sit idly by if I can prevent others from having the struggles that I’ve had.

And realistically, my health is pretty good at the moment, with a few flares here and there, which are mainly self-induced. Because I know what these diseases can do to people, if I have the strength to work on these projects now, I should.

After all, if we’re not willing to speak for ourselves, who else will?


Last Saturday, a friend of mine and I completed the Arthritis Walk. We walked three miles in 80-degree weather. But it was an important step for me in acknowledging that my life has changed. Last year, I briefly considered the Arthritis Walk, but it was happening just a few weeks after I was diagnosed, and I didn’t feel physically or mentally able to do it. This year, though, I was determined. And I hope to put together a bigger team for next year.

I also attended the Fifth Annual Chronic Illness and Postsecondary Educational Symposium at DePaul University, where I presented on “Personal Problems As Public Issues: Dealing with Chronic Illness in the Academy.” You can access a PDF version of my presentation here.

Much of my presentation addresses what I have been working on in terms of chronic illness advocacy stuff here on campus. The projects are somewhat slow going. But I guess that’s what happens when trying to navigate the red tape of bureaucracy.

The keynote speaker at the Symposium, Karen McCulloh, who is the Executive Director of Disabilityworks at the Chicagoland Chamber of Commerce (, was incredible. McCulloh has Multiple Sclerosis, and has severe vision and hearing problems as a result.

I so wish that other schools could have programs like DePaul’s Chronic Illness Initiative, which facilitates the successful education of students with chronic illness.

I definitely felt overwhelmed at times. So many people doing incredible things despite illness. There were times during the day that I wanted to escape to have a good cry. A lot of positive energy has been released from a lot of crappy experiences. It was amazing to see the physical and mental toll that illness has taken on people younger than me.

Overall, the conference was a good experience. Plus, I got to meet fellow chronic illness bloggers Laurie Edwards (A Chronic Dose) and Jenni Prokopy (Chronic Babe).

More than anything, though, I appreciated being in an environment where I didn’t have to explain everything, where I could just be myself. I still have this awful bruise from my blood draw over a week ago, and if I would have been presenting anywhere else, I probably would have made a point to cover it up somehow. But as I was getting dressed for the conference, I thought to myself: These are my people. I don’t have to worry about that. And I didn’t. And it was nice.

Even now as I sit here writing this, my arms are hating me after a long day of carrying my few purchases up and down Michigan Avenue. And it’s reminders like this that hammer home the point that I’m sick. The change of scenery, though, was much needed and very much appreciated.


Recently, one of my good friends was ill and she called to tell me how strong she thinks I am because she couldn’t imagine having to be productive when feeling as bad as she did for any protracted length of time. This is one of those moments of connection that are rare. As McCulloh said in her speech, “We don’t know how much strength we have until we are called upon to use it.” I think this is very true. And sometimes, I don’t think we recognize the strength we have even after it has been deployed.

She also said, “We will always be in the position to educate.” I think this is true, as well. For chronically ill people, everyday is an example of continuing education. We try and stay up-to-date on information regarding our illnesses, we try and meet people who are like us, and we try to educate those around us. At times, this can be exhausting. But the truth is, we don’t fight illnesses. We fight the ignorance of people who only worry about issues that directly impact them. And the truth is, at one point or another, everyone’s lives will, in some way, be impacted by chronic illness. It might not be your issue today, but it might be your reality tomorrow…

Just thought I’d put it out there that today, May 1st, marks the beginning of Lupus Awareness Month, so it’s very fitting to be engaging in the struggle for recognition.

And don’t forget to check out this week’s Grand Rounds, which was hosted by Kerri from Six Until Me, and includes one of my posts.


  1. Hi Leslie,

    I am so happy to have found your blog. I promised myself I would spend a little less time at the computer today, so I am going to bookmark it and come back to read it in full.

    Love the advocacy issues...this is something that just recently started passing my mind more frequently. Would love to talk more about it in the future.

    RA Guy

  2. Thanks for your comment, RA Guy. Looking forward to talking more!