Hearing the voices of the chronically ill in higher education

Hearing the voices of the chronically ill in higher educationRecently, there has been a significant amount of press about chronic illness and higher education.

And by significant, I mean more than nothing. 

And the results, not surprisingly, are not very good.

One of the articles, “The Extra Burdens Faced by Young People with Chronic Illness”, is by Toni Bernhard, and appears on the Psychology Today website.  While this article focuses on a variety of the burdens that young people with chronic illness face, in terms of higher education, it highlights the difficulty that many chronically ill undergraduate and graduate students have in finishing their educational pursuits.

This doesn’t surprise me.  Far and away, the majority of people I have talked to, who have chronic illnesses, have been unable to finish their educations.  To me, this is heartbreaking, and is not the fault of those individual students, but rather points to significant flaws in the higher education system. 

Another article, “When It Comes To Chronic Illness, College Campuses Have A Lot To Learn”, appears on WBUR and is by Laurie Edwards.  This article highlights a lot of what I, and others, have personally experienced.  The main point of contact for students with chronic illnesses is the disability services office.  The problem with this is two-hold.  First, and most significant, is that many students who are chronically ill do not view themselves as disabled, and therefore do not even make an attempt to try and get services.  The second problem is that disability service offices are not equipped to deal with the needs of chronically ill students. 

I will say, though, that part of this article seems misguided:

Edwards writes, “For faculty, one of the most difficult challenges is to be accommodating while still maintaining the classroom’s integrity, and the integrity of the student’s education. Working with students to ‘triage’ deadlines and assignments so they can stay enrolled without putting their health in danger in the process is important. Illness isn’t a free pass for incomplete work; it’s an extenuating circumstance that requires negotiation and mutual accountability.” 

As someone who taught undergraduates, one thing I told my students at the beginning of every semester is that it is much better to discuss difficulties early, rather than waiting until the end of the semester.  When this does happen, it does sometimes seem like the student is trying to get out of a deadline. 

However, that very thinking is what hurts chronically ill students.  For the first thought to be to wonder how students are trying to take advantage of the system is exactly what leads students not to disclose their health issues in the first place – for fear of stigmatization and retribution.  And let’s be real: there is plenty of stigma that already exists around this population of students.

Granted, students need to be their own best advocates.  But this is hard for the following reasons:

  1. This may be the first time that they are dealing with their health issues on their own.
  2. If the health issue is something that is new to the student, it may be extremely overwhelming to cope with their new reality.
  3. There are not that many options for these students.  Often, they get bounced around the system, get tired, and give up. 
  4. For students with unpredictable illnesses, it may sometimes seem easier not to disclose until it becomes necessary.  But a health crisis, even a “small” one, can be devastating.  The semester that I was hospitalized for three days – that’s it, three days – was my worst semester grade-wise in my graduate school career – and I don’t think that’s a coincidence.  When I wanted to come up with a contingency plan – given that, as a PhD student, my livelihood and health insurance were tied to me being a student – no one was willing to help me do this.

And while a recent article in Inside Higher Ed does not specifically look at students with chronic illnesses, it points to the larger scope of the problem in the title of the article, “Dropping the Ball on Disabilities”.

Because only about 4.6% of college students are chronically ill (according to the American College Health Association), there aren’t a lot of us on individual college campuses.  But social media, especially Facebook and Twitter, are helping us connect with each other, and we are finally getting our voices heard. 

Because I became rather vocal on my campus, I was able to connect with a few other chronically ill women, and they have become life-long friends.  I am so grateful for those connections, and cannot imagine how much more difficult my situation would have been without them.     

For me, this is my fight every day, despite the fact that I am in somewhat of a more supportive academic environment than I was before.

(I’m still flaring a bit, but I’m back on my soapbox.  I can’t keep quiet on this topic for long).

And that’s why, after battling to finish a PhD, which I did, I made the decision to continue my education in getting a second Master’s degree.  I know that some people may view this as a backwards step, but to me it makes the most sense of most of the things I have done in my life.  And I do feel like I am finally in the right place for me. 

If you are thinking post-college and/or about career options with chronic illness, check out Chronic Illness Coach Rosalind Joffe’s Kickstart Your Career Program, specifically for people in their 20s and 30s who have chronic illnesses. 

And if you are a graduate student, specifically a PhD student, and you have a chronic illness or disability, check out the great blog, PhD(isabled).      

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