By Casey O’Brien

 

I spent years bouncing between doctor’s offices, trying to find out what was going on in my body.  I was finally diagnosed at eighteen, but I continue to struggle to manage my diseases and get the support that I need.  To me, it seemed clear that this topic needed to be studied.

THE RESEARCH PROJECT

I am a recent college graduate living in Oakland, California and I live with chronic illnesses that take a toll on me and limit my abilities to do the things I want to do. I live with Mast Cell Activation Disorder, PCOS, and more.  I just finished college a few months ago, and for my senior thesis in sociology, I chose to do a large-scale research project on chronic illness and its impact on the lives of women like myself—and like you.  I had always had poor health, but as a teenager, I started developing strange symptoms and I began to miss vast swathes of school.  As my senior year approached, I thought about the topics that I was most interested in, and I realized there was nothing I was more invested in than analyzing the misunderstood impacts of chronic disease.  Now, I am presenting it to the audience that I care most about—my peers in the invisible illness and disability community.

Chronic illness is an invisible epidemic in the U.S. and beyond, and its impact is only beginning to be understood psychologically, socially, economically and politically. It is centrally important that the medical sociology community pay attention to this problem, especially as it impacts women.  Women, as we know, tend to report poorer health than their male counterparts. Rather than reporting bias, as we once believed, it is clear at this point that this is due to the greater weight of illness that falls on their shoulders.

 

THE INTERVIEWS

I interviewed a total of sixteen women for this project and I surveyed 62. They ranged in age, race, ethnicity, and profession, although the majority were white.  My interviewees were primarily recruited via social media.  They ranged hugely in the diseases that they lived with, from the common to the extremely rare, from the manageable to the debilitating. We spoke either on the phone or via skype, or occasionally in person. After my interviews, I would listen through hours of recordings, immersed in the stories that my respondents told me.  What I learned from them was extremely eye-opening, eye-opening enough to fill a 30-page paper and have more to say.

 

What started as my senior thesis project became a vocation, a mission much larger than myself.   The women I spoke to had stories that enlightened me, educated me, and broke my heart. I learned so much from them, but for the purposes of this article I am going to focus on one concept that was central to my paper and that came up repeatedly in interviews and survey data:  the way that chronic illnesses impact the social roles we want (and are expected) to play.  In sociology, we call this biographical disruption: the process by which the “biography” we are writing becomes interrupted.

 

All of us play a variety of roles in our lives, as members of a family, a community, a company, etc.  For many of us, these roles become the cornerstones of our identity.  For example, for many of the women that I spoke to, being a mother was a hugely important part of how they identified.  For others, their job was an important identifier or a favorite activity.  Whatever the role was, however, most respondents had difficulty in performing that role after they were diagnosed with a chronic illness.

 

LOSING YOUR IDENTITY

For one my respondents, a middle-aged woman living in the Pacific Northwest of the United States, who I will call Annabelle, knee pain, inflammation, and respiratory issues eventually led to a diagnosis of the rare disease relapsing polychondritis.  Although she was able to keep working as a nurse for a period after her diagnosis, eventually she was unable to.

She said, “I’m on disability….It was a very hard time for me to have to stop working.  Kind of being a nurse is your identity. It’s kind of your personality to help, and that type of thing.  So that was very difficult, it is still very difficult at times.  It was very difficult to have to stop working.”

Annabelle had felt that her job as an aider of others gave her purpose, and losing it left her feeling unmoored.  She was very depressed for a period after going on disability. Eventually, however—and this is a key part of my findings—she was able to move on by finding another way to identify.

For Annabelle and others, replacing the identity that was lost with another was important—they could not go on without any identity at all, so they reshaped their personalities around a different behavior, personality type, etc. For Annabelle, this came from entering a mentoring program where she mentored younger women. For another respondent, she became involved with the lymphoma society and volunteered at the school she once taught at after she could no longer work.

Another key way that respondents dealt with the loss of identity was by integrating their illness into the way that they identify themselves and shaping it as a part of their personality. One of my respondents now talks frequently about her diagnosis and uses it to help her connect to others; it has become a large part of how she sees herself and how she performs publicly.  This has also become a part of the way I identify myself;  being a woman with an invisible disability is a part of who I am and something I am proud of.

However you deal with the loss of identity that can come with a chronic illness, it can be devastating.  This was the key takeaway from my research—that women who had been diagnosed with a chronic condition need support because it changes their lives forever.

It is my hope that if we continue to support one another and talk about these issues, we can help to alleviate the pain and suffering that so many of the women I spoke to experienced.

 

If you have further questions about my research or just want to say hello, shoot me a line at caseymob@gmail.com. I would love to hear from you.

 

 

 

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