This project was created for Stanford's Medicine X Conference 2016 by 2016 ePatient Scholar Heather Aspell.

View Heather's other art created for MedX 2016 here.

Making the Invisible Visible

How taking and sharing MEDICAL PHOTOs HELPED ME OVERCOME INTERNALIZED ABLEISM AND IMPROVE MY RELATIONSHIPS WITH MY HEALTHCARE PROVIDERS

Although I have been chronically ill since childhood, I have spent most of my life trying to hide all signs of my chronic illnesses and disabilities. I never recall anyone directly saying that this was what I was supposed to do, but I now understand how the lack of representation in media and everyday life, as well as the casual ableism inherent in the ways that disabled and chronically ill people are discussed and treated in everyday life resulted in me believing I needed to hide my illnesses and disabilities because they made me somehow inferior to healthy, able-bodied individuals. I now know that this is often referred to as “Internalized Ableism" and it is an internal struggle that I and many other chronically ill and disabled individuals must contend with in addition to the struggles we face from more direct forms of discrimination.

Unfortunately, my attempts to hide my chronic illnesses only made things more difficult for me. In college and law school, I did not take full advantage of disability services. In college, I hid my struggles from friends which only made me feel more isolated. And for the first part of my career as an attorney, I desperately tried to hide the fact that I was chronically ill at work. Instead of utilizing accommodations that could have helped me to be more successful without further damaging my health, I pushed myself unnecessarily to hide my illnesses and disabilities, which only resulted in me becoming more ill. My health continued to deteriorate, partially due to my own stubborn insistence on working twice as hard to hide my illnesses, and as my illnesses progressed it soon became impossible for me to hide. This downhill spiral culminated in a two-week hospitalization in 2013 for a major flare up. At this point, I was forced to stop working entirely, so I found myself applying to receive disability benefits and using a cane and handicap placard due to increasing mobility difficulties.

HOW SELFIES HELPED ME OVERCOME INTERNALIZED ABLEISM

Because I had built up so much of my personal identity in being able to overcome and hide my illnesses, I found myself extremely depressed when I was no longer able to work and becoming more visibly disabled. I thought these things meant that my illnesses had won, that I was weak, and that I was somehow a failure. This was of course that pesky "internalized ableism" at work in my mind. However, it was also during this time that I started documenting my daily life, which consisted mostly of medications, infusions, injections and frequent doctor appointments, by taking photographs on my iPhone. I documented hospitalizations, procedures, tests, surgeries, and doctor appointments. Initially I took these pictures just for myself, and not for sharing on social media. My memory was very compromised due to the medications I was taking, so I wanted to be able to keep track of everything that was happening to me for posterity's sake. 

It was also around this time that I started to engage more openly and honestly with other chronically ill individuals online. I figured because I was no longer working, it was less important for me to keep my reality hidden. I found numerous wonderful communities on Twitter and Instagram starting with the #rheum community where I made friends with other individuals with chronic illnesses similar to mine. Over the past 3  years, other wonderful communities for chronic illness have grown on Twitter (shout out to Dawn Gibson's #SpoonieChat and Britt Johnson's #ChronicLife). As I continued to interact with others who were more like me online, I started to feel less ashamed about my own limitations. I started to share my photos at first with just my fellow chronically ill friends in these online communities, but eventually I became comfortable enough to post on other social media sites where friends and family who might not have known about my illnesses previously could see them too. I was blown away by the positive reception I received. I started to get a great deal of support and encouragement from the very people I was afraid of sharing my struggles with for so many years.

More recently, I also discovered Karolyn Gehrig's #HospitalGlam on Instagram and Tumblr, which inspired me to inject more creativity into my selfies. Motivated by Karolyn's vision for #HospitalGlam, I took less pictures of IVs in my arm and more pictures of myself taking control of the dehumanizing spaces I found myself in so frequently. In doing so, I began to see myself as a more empowered patient. My identity was no longer that of someone who had been overcome by her chronic illness.  As I shared all of my photos on social media, I got feedback from others who saw strength where I had previously seen weakness. This transformed how I saw myself and helped me to do the very hard work of unraveling the ableist thought patterns that had contributed to my depression. I started to see myself as empowered, strong, and beautiful, despite the challenging circumstances I found myself dealing with each day. 

This change in how I saw myself had profoundly positive implications for my mental and physical health. For example, I developed symptoms of post-traumatic stress disorder after my hospitalization. The appointments I was attending multiple times each week for months and months after the hospitalization were extremely challenging for me to manage given the delicate emotional state I was in at that time. By taking and sharing the self-portraits and other images of my experiences, I felt more empowered and less afraid, which is one thing (in addition to lots of therapy and medication) that has allowed me to better manage the symptoms of my PTSD. Before each appointment, I managed my anxiety and fear by focusing my energy on taking these photographs. And sharing them with other chronically ill individuals who understood some of what I was going through reminded me of my strength, and helped to give me the confidence I needed to work through my trauma and internalized ableism. 

How SELFIES IMPROVED my relationships with my HEALTHCARE PROVIDERS

For most of my life I had felt silenced in doctor appointments. I felt intimidated by the environment, despite being a life-long patient. I wanted to be a “good” and unproblematic patient. I did not want to bother anyone by complaining, so I stayed silent and just listened to whatever the doctor had to say. I did not ask a lot of questions. I was well-educated about my conditions, but did not advocate strongly for myself with that knowledge. 

However, as I began to feel more empowered through the taking and sharing of these selfies, I began to act more empowered. I started to assert my individualized needs and quality of life goals to my healthcare providers. And to my amazement, they listened and responded by adjusting my treatments to be more individualized for me. I asked more questions, and more easily felt able to share about the challenges I was facing both physically and emotionally. This allowed me to receive better care.

Through this transformation, I realized that the doctor-patient relationship truly is a relationship. And like any other relationship, it requires effort from both individuals in the relationship in order to be successful. Although there is a great deal that needs to be done to improve the healthcare system to feel less dehumanizing for patients in order to better encourage patients to engage with their doctors, this change can begin with individual patients and doctors working to communicate better with each other.  Based on my own experience, and anecdotal evidence from other patients, improved communication between patients and providers can truly improve the quality of healthcare received and therefore, improve the patient’s quality of life. In my own experience, the act of taking and sharing these selfies is what empowered me to assert my individuality with my physicians which resulted in my receiving more personalized, and therefore better, healthcare! I’m happier than I have ever been with my relationships with my doctors, and I attribute much of that to transformation that occurred when I started taking and sharing my photos. 

How SELFIES GAVE ME CONFIDENCE TO UsE Mobility Aids

Using a cane was another challenge that I  overcame with the assistance of my selfies.  When I first stopped working, I found myself stuck in the house for extended periods of time. Mobility difficulties were a big part of what kept me at home. Although I had a cane, I rarely used it  because of that internalized ableism that gave me anxiety about what other people would think or what it would mean about me. Eventually, as I became more empowered, I realized I was going to be stuck on that couch forever or I could get over my fears and just use the cane. I started to use it, and to be honest, at first it was very hard. Initially I hid the cane in photos. I did get strange comments and looks from strangers. Despite this, I kept using the cane because I did not really have any other choice other than staying inside all day every day. Eventually, in part because of the confidence I was gaining from my medical selfies, I became confident enough to start taking pictures of myself with my cane or wheelchair. By taking and sharing these pictures of myself using mobility aids, I began to feel more and more confident in using them. And as I used my mobility aids more, I was able to get myself out of bed and out of the house more. This increase in activity has undoubtedly improved both my physical health (#MotionIsLotion) and my mental health, and I continue to remain as active as I can today with the help of my cane.

The development of my confidence as an empowered patient can be seen by looking through the photos. When viewing my photo galleries, I can see how I start off looking uncertain, but end up becoming more confident as I get more fun and creative with my photos. To this day, I enjoy taking fun pictures while waiting for my appointments - it brings me a sense of purpose. And as I share them with my followers on social media, I hear frequently from others who are inspired to use their mobility aids with more confidence because they are seeing reflections of themselves. Similarly, whenever I see others post photos of themselves in medical spaces or using medical equipment or mobility aids, I feel inspired and less isolated in my own journey.

Although I always knew there were other chronically ill and disabled young(ish) adults like me, that knowledge did not mean much until I began to actually see these people in pictures on social media. As the saying goes, “a picture is worth 1,000 words.” Indeed, seeing oneself represented visually has a powerful impact. Unfortunately, disabled and chronically ill individuals are seriously underrepresented in media. And until we begin to see ourselves more frequently in media, an effort many disabled and chronically ill individuals are working to advocate for, we can connect with one another via social media in order to see that we are not alone. I hope that by continuing to share my journey openly with my photos, I can inspire others to become more empowered patients, and to overcome any internalized ableism that is preventing them from living their best lives!

To see more of my photos, follow me on Instagram at @haspell or visit the full photo galleries here.

To see similar medical photos taken by others, check out a few of the hashtags that I regularly use on Instagram including #HospitalGlam #Spoonie #CripplePunk #Rheum #Medaesthetiques #ChronicLife and more. Many diseases have their own hashtags, which you can search for here.

This project was created for Stanford MedX 2016 as part of the ePatient program. You can view the other art that I created for MedX 2016 here.

You can also view my photo essay "Drowning" here!