Reflecting on Being a Graduate Student with a Chronic Illness/Disability

I am feeling triggered. Eight years after I graduated with a PhD from the University of Michigan, they are finally, finally starting to address the issue of graduate students with disabilities. While I was a student, I became vocal about experiences I, along with others, had as a result of identifying as a student with a chronic illness or disability.

I’ve linked the report, “Executive Summary of Report from Committee on Graduate Student Experiences with Disability Accommodations at the University of Michigan”, below:

https://rackham.umich.edu/downloads/grad-student-disability-accommodation-experiences-umich.pdf

The opening letter ends by saying they are considering a role for an advocate for graduate students with disabilities. This is exactly what’s needed. And I could do it.

The University of Michigan and others need to know they are AINO – this is my new term, maybe it will catch on – Accessible in Name Only. They opt to do the bare minimum, but what they don’t realize is that while they might not get sued, they won’t get cheered on either.

In my experience, it was hard. There was no support. I even had my dissertation chair tell me that if I went on to get a second master’s degree after the PhD, it would be viewed as a backward step. So what did I do? I did just that and I never told anyone on my committee. I told them I had to take some time and focus on my health and figure out what my next move would be. Eight years later, I haven’t spoken or heard from any of them. And it saddens me. My only crime was becoming chronically ill. Whether or not I could have made it as an academic sociologist, we’ll never know. But the reason I didn’t try is because I wasn’t encouraged, in fact, it was more the opposite. And as much as I am a fighter and the more someone tells me “no”, the more likely I am to try and prove them wrong, I didn’t have that kind of fight in me for myself.

I want to fight for chronically ill students in higher education. I want to go to battle for them like I hoped someone would have gone to battle for me. But it’s not about changing individual departments and disciplines, it’s about changing the institution of higher education. It’s about recognizing the unique issues that students with chronic illnesses and disabilities face, and finding ways to make sure they are successful in the academy in spite of that.

I wrote a letter to the Dean of Rackham graduate school to tell him how I felt about the report. I could have written the entire thing myself. I’m including it here in the hopes that someone from Rackham will reach out to me. My experience at U of M led me to Sarah Lawrence to study and focus on this issue specifically, so it’s time to take this journey full circle, back to where it started.

Dear Dean Solomon,

I am a 2007 graduate from LSA and a 2013 graduate from Rackham. During my first year of graduate school, I was diagnosed with multiple chronic illnesses. As you can imagine, this came as quite a shock to me. I was in the graduate school “bubble” and imagined that would be the main focus of the next few years of my life. Then life reared its ugly head and I became chronically ill. 

Amongst other things, I was told that I would never make it in academia and would never make tenure if I stayed on an academic track. I was also told that maybe I would be a "more empathetic sociologist" because I was sick. 

While in graduate school, I was as active as I could be in advocating for graduate students with chronic illnesses and disabilities. I still receive emails and today I read the Report from the Committee on Graduate Student Experience with Disability Accommodations at the University of Michigan in its entirety. To be honest, I could have written this report. It saddens me that in almost eight years, so little has changed and the same, if not more basic questions, are only now being answered. 

When I went to SSD, I was met with confusion. I was asking for accommodations that could potentially change often. If I was feeling good, I would not need them. If I was feeling poor, I might. I needed a contingency plan and no one was able to provide me with one. My livelihood and health insurance were tied to me being a graduate student. The prospect of becoming seriously ill and having all of that ripped away was incredibly distressing. SSD wasn’t equipped to handle that; in fact, I didn’t really find anyone that was equipped to handle my situation. When I expressed concern about my preliminary exam, which would put me in front of a computer for eight hours, the accommodation I was provided was that I could take half of it the day before the scheduled exam and the other half the following day. This was not ideal, but I had no other choice. I ended up in a freezing computer lab, and by the end of the first four hours, my joints were so stiff, I didn't know how I’d be able to walk home. That’s just one example of many struggles I faced throughout my six years of graduate school at U of M. 

I know that my situation is unique as I went from being a healthy undergraduate to being a chronically ill graduate student in the same department. But the change in faculty members’ associations with me were unmistakable and profoundly sad and disappointing. I know that being a 22 year old chronically ill graduate student was not how I had envisioned my graduate school years, but being shunned and looked down upon in the same department that awarded me the award for the best undergraduate honor's thesis, was almost too much to handle. I finished my PhD in six years and was one of the first in my cohort to graduate, knowing that if I took more time due to my illnesses, it would not have been looked at in a good light, even if my peers took longer just because.   

After completing my PhD, I went to Sarah Lawrence College and received a master’s degree in Health Advocacy, focusing on chronically ill students navigating and succeeding in higher education. I miss the University of Michigan. I miss the intellectual growth that I received. But no one empowered me to go the academic route and I was conditioned to believe that if “I couldn’t hack it, I shouldn’t be there.” 

Eight years later, the experiences I had as a chronically ill graduate student at the University of Michigan remain traumatic for me, and had a profound impact on what I have gone on to do (and not do). I do not think that this is a phenomenon unique to the University of Michigan, so please don’t take this email that way. I think this report is a good, albeit long delayed, first step. I know that many of us have watched as accommodations that we requested and were denied have been put into place for the masses due to the pandemic. We now know that what we were asking for is not so farfetched or impossible. 

I hope you or someone reads this, and I hope someone reaches out to me. The needs of chronically ill students are still unmet and I fear that by focusing on the issue solely from a “disability” lens will continue to marginalize and silence chronically ill students, many of whom may not consider themselves disabled. 

Sincerely (and in solidarity),

Leslie Rott Welsbacher, MA, MHA, PhD

You Can Call Me Doctor Rott

Well, not that kind of doctor…

But on Friday, I defended my dissertation, so I am now a Doctor of Philosophy in Sociology. 

It’s hard to believe that I am basically finished with my graduate program.  It has been a long and difficult six years, punctuated by being diagnosed and living with multiple chronic illnesses.

It meant so much to me to have my family at my defense (literally and figuratively) – my parents, sister, aunt, and grandparents, my boyfriend, and several good friends, one of whom flew all the way from Seattle to be there for me.   

And it made me realize that while getting a PhD is a huge accomplishment, what actually means more are the people that I am surrounded by, who have helped and supported me along the way. 

Because I couldn’t have done this alone.  It certainly wasn’t easy. 

Even the defense was difficult.  My committee peppered me for over an hour with really hard questions.  But in the end, the revisions I have to make are minimal, and I feel that I stayed true to myself and the kind of dissertation (hopefully one day book!) that I set out to write.

It really is a surreal feeling to be done.  I am still trying to wrap my head around the idea.  When I woke up Saturday morning, it was a huge sigh of relief to realize that it’s over.  And to know that I never have to face the firing squad ever again – amazing! 

It also feels good to finally be in a place where, as both as a person and a scholar, I can be myself.  So much of the past six years was spent making other people feel okay about my situation.

I’ve talked about it a lot before, but when you are in a strenuous graduate program, the assumption is that all of your time and energy will be spent concentrating on school.  And if you’re not doing that, for whatever reason, you might as well not be here.  As I have discovered over the years, this is not specific to my discipline.  This is the nature of the graduate school beast regardless of subject area, specifically if you are in a PhD program. 

But aside from that, it really has been a crazy ride.  And I made it. 

There were definitely times when I wanted to quit.  Where I felt like it would be easier if I just threw in the towel.  But that’s not my nature, and the more people told me that I should leave, the more I wanted to stay.  And not only stay, but finish. 

 
And despite everything, I am one of only a few people in my cohort who have finished so far.  It took me six years, and considering everything I had to deal with, it’s pretty amazing not only to finish, but to finish “on schedule”.    

Without listing the acknowledgements from my dissertation (which is three pages long!), I have to say again that there are many people I couldn’t have done this without.  And I am so grateful to each and every one of them.

And I am grateful to all of the readers of this blog who have supported and encouraged in ways that many of the healthy people in my life could not.  They say it takes a village, and it totally does.  While the researching and the writing of the dissertation was all me, seeing this program through to the end was an amalgamation of all of the supportive people in my life. 

Even if I can’t write prescriptions, it is pretty cool to be a doctor.  I might just let that go to my head a little bit.     

Now on to the next adventure…

When Illness Slaps You In The Face

When Brittney posted her theme for PFAM, my reaction was great topic, but it doesn’t really describe me right now. 

But oh how the mighty fall.  I was totally wrong.  Her theme fits my life perfectly right now.  Here’s why. 

I’d been feeling pretty good, despite having a busy travel schedule and some ups and downs. 

But then school started.  And the weather was cold and rainy. 

And the fatigue, the fatigue has come back full-force.

And it was Thursday afternoon last week.  I was exhausted.  I spent the afternoon on the couch.  But the biggest part of my week was still ahead.  I had to teach on Friday, three one-hour long classes, back-to-back.  

Last year I was on fellowship, which meant that I didn’t have to teach.  I got to cruise and do mostly what I wanted, while still receiving my stipend.  In theory, last year should have been uber productive.  But it wasn’t, for many reasons.  Mostly there was some serious family stuff that went on and then my breakup, which really brought life to a screeching halt for awhile. 

So I should have accomplished a lot last year, and I didn’t.   

And I honestly believe, and in fact now realize, how much teaching takes out of me.  It’s crazy because with attending the professor’s lecture (three hours a week), holding office hours (two hours a week), and my actual teaching time (three hours a week), that’s only eight hours a week that are completely spoken for. 

Then there’s my two hours a week of volunteering and my hour of kickboxing.

So that’s not really a lot of my time that is actually spoken for.  But then there’s teaching prep, which can take a while given the dinosaur of a copy machine that I have to deal with. 

I know that a lot of times I take on too much, and my days are filled with meetings and other commitments that come up throughout the year.  But I don’t feel overcommitted right now.  I just feel like I am not capable of handling what I’ve taken on, which right now, is at the bare minimum.    

In the past, I’ve been taking classes and teaching.  And with the way I feel lately, I honestly don’t know how I ever did it.  Maybe because I was already not feeling well, I pushed through, and didn’t pay attention to the fact that what I was doing was contributing to my un-wellness.  But this time, I went from feeling relatively well to feeling pretty awful. 

 

Ironically, illness’s way of slapping me in the face, of telling me to wake up and face reality, is by making want to sleep all the time.

I didn’t realize, or maybe I didn’t want to realize, that teaching is something that puts me more into illness mode than I was before. 

But it’s not as if I have a choice.  Right now, this is my livelihood. 

Clearly, I will have to find a balance so that I am able to get the things done that I need to accomplish. 

Leaving campus at 5:30 p.m. or later puts me at a deficit.  I really start to lose energy consistently around 4:30 p.m. on days when I haven’t had a chance to nap.  By the time I get home, it’s all I can do to make dinner and then sack out on the couch. 

I think the thing that makes teaching so exhausting is that it’s a performance.  You have to be on all the time.  You can never let your students see that you are having a bad or an off day.  And as someone with a chronic illness, I tend to have those kinds of days more than most.

But the thing that I forget the most, it isn’t the pain – although I’m certainly glad when the pain is gone or lessened – but it’s the emotional toll that pain and not feeling well takes.  It’s the laying on the couch on Friday night, my head is pounding, my ears and throat hurt.  I’m curled under a blanket, alone with myself and my thoughts and my pain.  And that just sucks!

You can’t be complacent.  You can’t let illness get ahead of you.  But then again, you can’t also get too confident or cocky, because when you let your guard down, when you least expect it, illness rears its ugly head, and slaps you in the face.

So when illness slaps me in the face, privately I mourn the period of wellness that is now gone, but in public, I plaster a smile on my face and act like everything is fine.  To not do that would mean opening myself up for an endless onslaught of student complaints.  It would mean making myself vulnerable to student disdain and dislike.  And that’s worse than feeling like shit.

“Below Zero”

It’s just about two and a half weeks into the semester, and already I’m feeling exhausted and drained. I received a link to the following documentary, by Claude Parker, from the leader of one of the support groups that I am a part of. The documentary is about living with lupus and rheumatoid arthritis*.

One of the women suggests that having lupus and/or rheumatoid arthritis means that you are always starting “below zero”. You are always starting at a “deficit”. And I think this is a very fitting way to describe what it means to be dealing with such illnesses. No matter how much sleep I get, or how much or little I do, I’m always exhausted. I’m always relying on my reserves to get me through. And sometimes my reserves run out before I want them to.

All of this is to say that I am working extra hard to stay rested and not get too run down, so I can avoid getting sick in the midst of what is promising to be a crazy flu season.

And with a new school year (or semester), comes a new group of people to decide whether or not to disclose to. Because of the things I’m hearing about students getting sick already, and the potential of widespread illness, I do plan to disclose to my professors that I am chronically ill, and in the event that I do get sick, it could hit me harder than it might hit other people.

I hate having to operate on “what ifs”. It makes me feel like I’m sealing my fate to get sick by saying it. But on the other hand, I’ll be in worse shape if I don’t say anything, and I do end up getting sick (and have to miss school).

Right now, I feel like I’m at a double disadvantage. I start out at below zero because of lupus and rheumatoid arthritis. And I’m also at below zero because I’ve hit my limit. Right now, I feel as if I am below zero in every way possible…

I’ve realized, given recent events, that much of my time in grad school has been spent losing sight of what’s really important – me. I matter, and I’m worthy, and there are no letters in the world behind my name that can live up to that. I have to do that for myself. And I’m not sure I can do that here.

I want to live my life with no regrets. I don’t want to make the same mistake twice. And when I do make mistakes, I want to learn, grow, and become stronger as a result. Right now I’m unhappy. I am full of internal conflict, and I feel like my insides have been twisted together in knots.

More than anything, I want to be true to myself. And that means that in the end, I want what I do to improve the world. I want what I do to matter. And I want to be a good person and matter to others. I didn’t come to grad school so that I could get published in the top journals. I came to grad school so I could help heal the world. But in order to make a difference in the world, I have to heal myself first.

I’ve also hit my limit in fighting with myself. I’ve tried really hard over the past few years to strike a balance between my school and personal life. And not only have I failed, but others have failed, as well.

It has come to my attention recently that there are people who think they know what’s going on in my life, who absolutely don’t, even though they think they would like to. And I’ve found out that there are other people who ask my friends how I am doing or if I am okay. It’s funny because I never knew these people had any idea what was going on with me (and I’m not sure they really do). You know, I’m not going to volunteer that I am ill to everyone in the sociology department, in the context of the department. But if anyone ever came to ask how I felt or how I was doing, I surely would have answered them and provided them with any information they wanted. I don’t think I’ve actively tried to conceal being ill. I just haven’t been “out” to everyone because the response I’ve often received has been negative, telling me I shouldn’t aspire to an academic career, or that I’ll be a more “empathetic” sociologist because I am sick. I wonder how differently I would feel about things now if more people had actually made an attempt to care. I wouldn’t feel so alone, and I probably wouldn’t feel as conflicted as I do. But one thing is for sure. I don’t want to be here right now.

I know that the decisions I currently face are difficult ones. But I am confident that I will be a stronger person having asked myself and attempting to answer the tough questions. I have always delighted in proving others wrong when they have doubted me. But I realize now that, that is not a sufficient reason for staying in grad school. Finishing simply to spite those who suggested I couldn’t or shouldn’t do it is not a valid reason for spending at least three more years at a place that I feel does not respect the person that I am or the person I hope to become.

I don’t think leaving permanently is an option. There was obviously something about sociology that spoke to me, my first day of my freshman year of college, and there was something about sociology that I kept coming back to, no matter how crazy or difficult things were as an undergrad. I had hope then, and I felt like what I was doing mattered. So what gives now?

I found out that I passed my preliminary examination. While this is something that I should be celebrating, I’m not. This monumental event is overshadowed by sadness and confusion. Do I belong here? (I mean, I passed my prelim, right? That says something) Did I make the right decision in deciding to go straight to grad school, and not stopping at all through illness? Sure, I’m happy that I passed. (I was so worried about failing, that I was nauseous while preparing to open the envelope) But in the back of my mind, I also think how much easier the decisions I face would be if I hadn’t.

I feel awful voicing this. It makes me sound ungrateful about the opportunities I have been given here. And that is certainly not the case. But in order to feel accepted and approved of, a person shouldn’t have to conceal who they are, or feel that they have to squelch something that is so much a part of their life.

Living a double life has always been exhausting, but these days, it’s more than that. It’s taking energy that I don’t have to give…

And I know that a lot of what is going to come from my friends is that I’m stronger than I give myself credit for. And I’m sure they’re right. But illness has also taught me that sometimes being strong means knowing when to say “I can’t”…

* Even if you don’t have lupus and rheumatoid arthritis, I would recommend taking a look at this documentary. It’s very moving.

Town Hall Speech

What follows is a speech I gave tonight at a town hall meeting about disability and access put on by the Graduate Employees Organization (GEO) Disability Access Committee, of which I am a member. As I indicate in the speech, this was the first time I have spoken to a group publicly about my illnesses…

I graduated from the University of Michigan in April of 2007 and was set to start the Sociology PhD program in the fall. While I thought that there was nothing to possibly derail this plan, I was very wrong. Throughout my senior year of undergrad, I had repeated strept throat and pink eye infections, bizarre stomach bugs, and the telltale muscle and joint pain – at first only after I worked out – then eventually, the pain never went away.

While I was able to start graduate school in the fall of 2007, my whole world quickly fell apart. I was in pain all the time and had unexplainable symptoms that would come and go in the blink of an eye. I had to go to several different doctors before I was able to find someone who took my concerns seriously…

In April of 2008, I was diagnosed with lupus and rheumatoid arthritis. While I struggled with frequent doctors appointments and medical tests, and not feeling well, I also struggled with what these illnesses would mean for my graduate school career, and more broadly, my life. Simply asking my department for symbolic recognition of the situation and its varied consequences was met with resistance and unease. I felt like I was met with the implicit charge that:

If I couldn’t cut it for any reason, I shouldn’t be here…

This journey has been fraught with failed attempts and missteps. The tangible changes, in many ways, remain to be seen. I know that my situation is unique in that it started while I was in graduate school and that I have a set of very unpredictable illnesses. But should you become a player in this game, or if you are already in it, you probably know, that it is not for the faint of heart.

Still, as I’m sure there are many others out there, as well, I mostly suffer in silence. As my cohort mates celebrated the end of our first year of graduate school last April, I was at the hospital receiving outpatient intravenous therapy. A stark contrast to the 22-year-old, graduate student life I thought I’d be living. It is only a recent innovation that I don’t rush to the bathroom to take my medication five times per day so that no one has to watch me pop pills and wonder why.

There is no doubt that illness is a lonely pursuit. It is isolating. It is a litmus test for friendship. And most of all, it is exhausting to wear the brave face all the time and have everyone around you be none the wiser. This is especially frustrating that when you do ask for help, you are met with ambivalence, and sometimes, downright nastiness.

It is ironic that those of us who are sick and tired, who are the most vulnerable, are expected to lead this fight on our own. As sociologist C. Wright Mills wrote in 1959:

Men do not usually define the troubles they endure in terms of historical change and institutional contradiction [...] They do not possess the quality of mind essential to grasp the interplay of man and society, of biography and history, of self and world. They cannot cope with their personal troubles in such ways as to control the structural trans-formations that usually lie behind them.

The truth of this matter hinges on Mills’ words. This personal problem, of illness and disability, is in fact, very much a public issue – even for those of us with invisible illnesses and disabilities. And until it is seen as such, the individuals that sit before you tonight will daily have to battle in order to gain the recognition and help they deserve.

*****

As I expressed earlier, while individual action and change are important, the difficulties incurred by Katie, Walt, and I point to much more deeply imbedded, systemic issues, issues that will not be surmounted by individuals alone.

There are many matters that still need to be resolved. People are often hesitant to attach labels to themselves or to be open about such issues. While I have become adept at talking about my illnesses, this is, in fact, the first time I am publicly disclosing them in a forum such as this.

At the heart of the matter, is often that people do not stand up for issues that do not directly involve them. As journalist Richard M. Cohen wrote in Strong at the Broken Places: “Know this. Ninety million Americans battle chronic illnesses everyday. Welcome to your future.”

While this statement may sound harsh and threatening, it is the truth. Although chronic illness and disability may not be on your radar screen today, they may be your reality tomorrow. That was the case for me. While disability issues were in the back of my mind, I never expected them to become “my” issue. But now that they are, I hope that with the help of others, something good can come from my experience.

What is truly needed, then, is a network of students who are disabled, chronically ill, or are aware of the importance of such issues, not only to those who are directly affected, but to the University community as a whole. We all deserve a living, learning, and working environment where we feel accepted and appreciated, and where our voices are heard, not because we are alone, screaming at the top of our lungs, but because there is a chorus of voices harmonizing together.

Mis(s). Directed And Mis(s). Understood

“I’ve been down this road walkin’ the line

That’s painted by pride

And I have made mistakes in my life

That I just can’t hide […]

I’ve been searchin my soul tonight

I know there’s so much more to life

Now I know I can shine a light

To find my way back home […]”

- “Searching My Soul Tonight”
(Theme Song From Ally McBeal),
Vonda Shepard

A lot has been going on in my life recently; broad, abstract questions arising from small, specific (hopefully isolated) incidents. I know, that makes about as much sense as I feel my life does right now…

I was off school this past week, which was nice. I took a trip to see a friend that lives three hours away by train. I was excited about getting away, but came back exhausted and drained, which was my own fault. Between hormones, the weather, late nights, a wacky medication schedule, and train travel, it was just too much for my body to handle. I’m definitely flaring.

This chronic illness routine gets old really quick. It wasn’t so much that having to pack all of my medication was a pain, as much as I was surprised at how quickly I was able to forget that I needed to be taking it. Truth be told, my medication schedule has been pretty thrown off for about the past month. But it’s always sobering to realize what I would feel like without it. And so, while I was only going to be away for about two and a half days, I decided that it only made sense to pack a weeks worth of meds, just in case.

Being chronically ill definitely puts a damper on being spontaneous, and maybe that’s why I feel so ill at ease making plans not that far in advance. And maybe that’s why lately, any opportunity to be spontaneous is desired greatly and often regretted afterwards.

While I recounted for my friend some of the exploits of the past six months (late nights, tequila shots, etc.), her response was something like most of that doesn’t sound like you at all. Lately, I wonder…would I know a “me thing” if it bit me in the ass?

This profound crisis of identity that has been going on for the past year or so is really bad. And it needs to end soon.

When I think about the fact that I’ve only been in graduate school for a year and a half, and that I’ve only been dealing with illness for about the same amount of time, it’s sobering. It feels like decades have gone by. Not that I’m wishing my life away, but the sludge could sure move a little bit faster. When do I get to the good part?

Clearly, what I have come to realize, is that graduate school is not the place for self-exploration and self-understanding, not the place for finding oneself, and not the site for teenage rebellion that’s happening a few years too late.

This is not the time to “feel your wheaties” (of any variety). Those who party harder than they hit the books are shunned, seen as slackers. All that fun is kid’s stuff. That’s for college, not for graduate school. Even so, if you aren’t 100% committed, for whatever reason, there is definitely a learning curve. The thing is, getting into graduate school makes you think that the next five, six, or however many years it takes you to get a PhD are set. But sometimes, life has other plans, and it’s often difficult for graduate school to accommodate massive life occurrences, such as illness.

And maybe that’s why those of us who become academics do. While we thrive on asking tough questions about the world, we never seem to have the time or energy to ask tough questions about ourselves.

And maybe that’s what has been so difficult about the past year and a half in dealing with graduate school and chronic illness. The lingering question is not so much Why me?, but rather, Who am I and how did I get to where I am today? And does my current direction make sense with the curve balls that life has thrown at me?

Lately, my whole world is off kilter. I went to the bank recently and put money into an account that I had closed several months ago. Luckily (and surprisingly) getting the money into the right account was an easy fix. But come on, where is my head?

I’m rational and practical. I like order in my life. I think I’ve started to worry that I’m always the downer, the party pooper, the one sucking the fun out of life.

All this is to say that I feel like I don’t really know who the heck I am. Sometimes I feel like a chameleon, adapting to the wants and needs of those around me, and not to my own needs, wants, etc.

When I flare, I tend to retreat. The other day is a good example. I was flaring and feeling a bit off, so I never got dressed or left my apartment. But the truth is, I have dragged myself many places for others, only to realize that after, I’m even more tired and drained than I expected to be.

It’s difficult to try and explain to my friends how I feel on a day-to-day basis, especially considering how quickly symptoms come and go. And no matter how hard some of them try to understand, it often seems easier for me to follow their plans than try and explain why they won’t work for me.

On a slightly more positive note, I am excited to say that the paper I submitted to the American Sociological Association conference was accepted to the Disability and Social Life section, which is very exciting. But the thought of having to fly out to California in August for my first professional conference and presentation, and all of the illness-related complications that could ensue, is particularly daunting, especially considering what a shock to my system two days of traveling through Michigan was.

The whole point I’m trying to make here is that I’m not living my life realistically right now. At some point, exactly when I’m not sure, I decided to try and stick it to my illnesses and live the life I would be living if I wasn’t sick. But that obviously doesn’t work. I’m not sure when I made this shift, but I do have to wonder about the following: when does the power of positive thinking become denial?

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).

Showing Up

Friday night I sat down to write a “poor me” post. I was alone in my apartment trying to recover from an exhausting week. But I didn’t end up finishing that post (as is evidenced by my lack of posting in recent days). Because the truth is, there were more ups than downs this week. And for once in a long time, the odds may finally be stacked in my favor.

As I’ve been writing about a lot lately, I’ve been having problems with getting my department on board about my illnesses and all that goes along with them. I had finally gotten a meeting with someone at the level of the graduate school. However, in talking with someone who has sort of been along with me during this entire process (even last year), I caught a break. The person I was talking to was very frustrated that I had been jumping through all these hoops without any help and offered to make a call to “a friend in a high place” on my behalf.

A half-hour later, I was in a meeting with that person, explaining the entire situation. And guess what? In two days time, more was accomplished than had been in the previous six months. This person called dozens of people for me, directed me to what forms had to be filled out by Doctor C, and was coordinating all of it. And Doctor C turned the form around in not even 24 hours worth of time.

Apparently, I’ve been talking to the wrong people all along, because I shouldn’t have been the one having to do the coordinating. But what is most interesting about this situation (other than the fact that it’s not what you know, but who you know) is that I was commended for taking the initiative to get “all my ducks in a row” before there was some emergency where they needed to be. While that was my whole point all along, I didn’t really see any positives where my abject failure is concerned.

However, in a roundabout way (about as roundabout as all of this coming together so quickly and seamlessly – finally!), this leads me back to an earlier lesson from this semester…

In my academic publishing class, my professor has stressed to us the importance of “showing up” for our daily scheduled writing times. In the beginning of the semester I rebelled against this notion. With a medication schedule and a newfound curfew/bedtime, I resisted any other attempts to further routinize my life.

But I’ve been doing some soul-searching these last few days, and I have realized that despite all evidence to the contrary, showing up really is key and I have a profoundly stupid ability to do so.
As I’ve tried to explain to several people, sometimes just my being able to be present in class, to drag myself to campus, to show up – is a big thing. And as I talk to others who skip class for no good reason, I realize that while others have to give me a break, I have to give myself a break, too (a shocking realization, I know).

But… [sigh] old habits die hard. And Thursday was a perfect example. Whether it’s the extra sleep I’ve been forcing myself to get over the last month and a half as per Doctor C or my newfound coffee habit (bad, bad, bad – I know), I do find myself with more energy than before. To me, though, extra energy still means exploit it, not conserve it. So I put in a 17-hour day. And it wasn’t until I hit my bed that I realized how exhausted and in pain I was. And I definitely paid for it all weekend.

Now the whole point of that is to say that now that my department is on board, I have to be more willing to ask for help and concessions when I need them. I didn’t just spend that last six months, and the last month in particular, trying to work these things out for nothing. And I should be more willing to take a day off when I need one. Everyone else does, so why shouldn’t I? After all, my whole purpose in this situation was to forcibly end my (and everyone else’s) denial that my life hasn’t changed since I’ve gotten sick. Because of course it has.

And now that things with my department are no longer on the fritz and I have people on my side, working to make sure that there are contingency plans in place, should I ever need them, I feel much more relaxed about things.

Of course, there are still hurdles to be jumped – personally, professionally, and medically – but for that matter, there will always be hurdles. At least for today, though, the hurdles are more my size. And even if I stumble along the way, at least I had the tenacity to show up in the first place.

* P.S. – Check out the first stop on the Women, Work, and Autoimmune Disease: Keep Working Girlfriend” virtual tour over at Rhymes With Migraine. The theme of that post goes really well with my post for today.

“Illness As Metaphor” For Life

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (3).

- Susan Sontag, Illness As Metaphor

*****

I’ve been a pretty terrible blogger these past few weeks, but between schoolwork, teaching, and the weather, my time and energy has really been spent. So it’s time for a catch up… (and I’ll attempt to be coherent here, but I have a lot to say)

*****

The thing I have been struggling with a lot lately is the disjuncture between fantasy and reality. There is the fantasy of what I would like to do or try to convince myself that I can do, and there is the reality of what I can do because of my illnesses.

Part of the problem, I realize, is that there is so much about ones person tied up in illness. I must not be as morally upright since I wasn’t able to resist the temptation of illness. Oh yes, because feeling crappy 99 percent of the time is such a desirable state of being… That somehow it’s my fault… As Talcott Parsons (a sociologist – no big surprise there) said of the “sick role,” people become sick so they have an excuse to be lazy and avoid their social responsibilities. So with that rhetoric in mind, I attempt to face the world in as true a fashion as I can muster…

The truth is, I’ve finally come to the realization that while I would like to deny the reality of my illnesses, I can no longer afford to do so. And this means, unfortunately, more disclosing (and even more unfortunately, uncomfortable conversations) than I would like to be doing (and having) at this point in time.

In an attempt to reach out to my department and attempt to find a balance, I’m left feeling even more than before that I don’t belong in grad school and that my work life and my personal life cannot possibly coexist in an academic environment. And that’s sad because for the first time all year, I’m starting to realize that my research does have something to offer to the world.

But in a conversation with someone I trusted that was supposed to be helpful, I was offered unwanted and unasked for advice and the suggestion that maybe my career will be helped by the fact that I’m sick – a sick sociologist who can empathize – is exactly what the field needs. Great! Where do I sign up for that?

I apologize (only partly) for the sarcasm, but that is the stage I’m at right now. Part of the reason I haven’t written in awhile is because I was so hurt, confused, and taken aback by the conversation that I had to distance myself a little. But with the help and support of some virtual and in-person friends, I realized that I had every right to be upset. And of course, I’m still trying to work through this specific situation, but I’m moving forward in terms of looking out for myself.

*****

Partly I feel so bad about all of this because I care too much about what other people think. And while I know that I shouldn’t, I do. It’s so frustrating because I’m asking for help and concessions out of necessity, not out of want. I wish I didn’t have to be having these conversations at all, but not having such conversations does no one, least of all me, any good at all. And yet, no one is making it easy for me to have these conversations.

And the truth is, I can see how stress exacerbates these illnesses. Last week was a crazy, non-stop week. One night, I got home knowing that I had all this stuff to do and then I couldn’t remember any of it. Literally, my mind was a total blank. I called my sister and she asked me what I was doing. My response was something like I’m sitting here trying to remember what I’m supposed to be doing.

I put in a 15-hour day last week and realized that I would be paying for it for several days afterward. A fine display from the old me, but not the smartest move for the new (and improved?) me. At some point, I am going to have to let myself off the hook for the things that are no longer realistic aspects of my life. At the same time, however, someone in my department is going to have to tell me that it’s “okay” and that I shouldn’t feel bad.

But it’s so easy to get caught up in the jumble of papers, proposal writing, teaching, grading, and all of the other responsibilities that come with being a grad student. And it’s hard for me to admit to myself that I have limits - and not superhuman ones, either - but real limits that I need to consider and pay attention to.

*****

I’ve had these dreams, nightmares really. I’ve mentioned before the dreams of all my teeth and hair falling out. But it wasn’t until the recent dreams I’ve had about helicopters literally falling out of the sky and crashing down in front of me that I realized that those dreams aren’t foreshadowing real events. But it’s what the dreams represent that is real. I’m living my life waiting for the next bad thing to happen. And I know that sounds awful and depressing coming from a 23-year-old, but the truth is, I feel like that’s all I know lately. While that thinking may protect you from the bad stuff, though, it also closes you off from allowing good things to happen, too.

I don’t really know how I feel about anything anymore.

It’s like the last time I went to the rheumatologist, Doctor C asked me if I had a list of questions (as I usually do). And I didn’t have any. It’s because the questions I want answers to, nobody, not even Doctor C, is capable of answering. Truth be told, there is still that lingering question that starts with a w and has an h in the middle and a y at the end. And it’s not the medical answers that I want. It’s not that I want to know how my body got so screwed up. It’s that I want to know how my life got to a place where good and bad swirl together to make gray. And the whole world appears cloudy. And daily I ask myself what I’m doing with my life.

It’s difficult to imagine that these are truly the best years of my life.

I’m truly feeling confused at the moment. And talk about confusing, I ran into Doctor C the other day outside of the hospital environment. And it was weird. Doctor C actually stopped, though, and asked me how things were going. I think that had this happened a few months ago, Doctor C probably would have ignored me. And as much as I think it’s a credit to the fact that our relationship is much better than it was before, it’s strange when various lives and identities (literally) collide head on. I’m still not sure that I’ve fully “recovered” from this bizarre occurrence…

*****

In some ways, I’m lucky that all of this illness stuff happened in the context of grad school. I was thinking about how it would have pretty much derailed my life in nearly any other situation (i.e. a year off, a job, or Teach for America).

But the truth is, we never really go into any situation tabula rasa (with a clean slate). And it was naïve of me to think that grad school would mark a completely new beginning. Because the more I think about it, the more I realize that grad school is just a continuation of my previous life as a student. But unfortunately, I can’t be that student anymore. And I find myself daily doing battle with two conflicting identities – the person/student I was then – and the person/student I am today.

*****

So after all that, why “illness as metaphor”, you ask? Because illness forces us in a very strange and roundabout way to face the big questions whether we are ready to or not. And it’s sad that it takes such a mind-bending event to make us reevaluate our priorities or who we are as people.

The other thing I will say about Sontag is that she talks about how cancer becomes this term used, not only for illness, but also for the people and things that are viewed as negative by society. And in some ways, I think this bizarre class known as autoimmune diseases has taken cancer’s place as the unspoken and unseen foe that has the potential to fester until the only result is to destroy everything it comes in contact with.

*****

(Sontag, Susan. Illness As Metaphor. New York: Picador, 2001)

Unloading

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!)

Personal Problems And Public Issues

How about a (very brief) sociology lesson to get your Monday morning started off right?

In sociology, we often define things based on whether they are personal problems and/or public issues.

This past week, since I last posted, I have been grappling with the decision of whether to make my personal problem of illness a public issue.

Sometimes it takes looking at someone else’s situation to realize that something needs to be done about your own. And sometimes it isn’t until that point until you really get the message.

I found out last week, in the midst of everything else, that one of my students is severely acutely ill on top of having a chronic illness. The difficulty and uncertainty that this situation has caused deeply affects all involved.

It has also made me realize that I need to have a contingency plan for my own health. How bad will I let things get before I need to take steps to drop classes or withdraw from the semester (or graduate school) entirely? At what point does my being stressed out by a particular person or event require action?

This situation with my student highlights that ones ability to admit their limitations to themselves can have a profound impact on others.

Sometimes we have to look outside of ourselves because introspection can cloud our vision. And in the foggy murk that is encountered, we are left confused.

I have been putting a concentrated effort into going to bed early, based on conversations with my rheum last week. This hasn’t worked as well as I would have hoped mainly because I have been hit by more lack of understanding from friends and peers.

I’ve been recently made to feel by several people in my life that nothing I do is good enough. I feel like I am constantly having to justify that I am trying my best and that I am exerting effort, even if the accusing parties would beg to differ. Most of all, I’m really trying to make an effort to work on getting my health to a more stable place.

I felt really down in the dumps this weekend, depressed about a lot of things. One of my friends made a surprise visit yesterday and we spent the day hanging out. It wasn’t so good for the work situation, but I think it was much needed on the mental health front. I’ve come to realize that if work doesn’t get done today, it will still be there tomorrow, and then some, and then some more.

The other thing that frustrates me lately is that it seems some people are viewing my illnesses as an inconvenience for them. This really troubles me. As far as I can tell, the only one who should feel inconvenienced by all this is myself (and maybe my family). It’s not as if I woke one morning and said, hey, I think it would be fun to get lupus and rheumatoid arthritis today. Or that I’m really happy that for the first time in my life, I have a curfew!

(And what the healthy don’t seem to understand is that I’m trying to build a positive relationship with my rheum. If I go to my next appointment still feeling bad and Doctor C asks if I’ve been making an effort to go to bed early, what happens if I say no? Then there is no reason for Doctor C to trust me. And Doctor C might think that I don’t want to work on getting better, if I so casually disobey orders.)

Just because I can’t stay out late or decide not to do certain things at all, shouldn’t be looked at as inconveniencing others. And yet, the unpredictability that these illnesses effect, make me seem flaky, wishy-washy, and unreliable. In some ways, it seems to me that some people view having me as a friend as a liability. And that really isn’t fair.

As I’ve said all along, I don’t want to be a burden to other people. I don’t want to take in any relationship more than what I give to it. So, if there’s anyone in my life who really does feel that way, I ask that they to bow out now.

It’s no secret that chronic illnesses impact a variety of people in a person’s social network, not just the sick person. And I think more than ever before, this week has made me realize that all of this illness stuff requires a delicate balance, which often times ends up tipping the scales.