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Perspectives on Patience: Navigating the Keratoconus Journey

Perspectives on Patience: Navigating the Keratoconus Journey

It was the first time, evidently in quite a long time, that anyone had isolated my eyes such that I noticed how obscured the view from my right eye had become. "Oh dear...," she said, "You've never worn contacts or glasses?" Growing up, I was the kind of kid who took secret pride in perfect scores on school vision and hearing tests. Of course, it's silly and self-indulgent to think about that now, but the point resonates. Much like with academics and other activities, eye health had always come easily for me. I'd never had the experience of encountering particular barriers to good vision, so naturally - in my immaturity - I took it for granted; well into college, I had absolutely no concept of just how valuable and vulnerable vision could be.

Around the beginning of my junior year, at a crucial moment in my personal and professional development, I began experiencing changes in my health and habits. These were subtle at first; I felt a bit of brain fog, or noticed dryness and pain in my eyes. As an under-slept overachiever, I assumed my health was deteriorating as a function of my own carelessness. Clearly, I wasn't taking very good care of myself - letting stress get the best of me.

Eventually things deteriorated to a point of alarm. Otherwise extroverted, I began to isolate myself and stopped engaging with friends and family. A lifelong musician, I became frustrated during practice and anxious during performance. I read and reread and reread passages for class - often, feeling a sense of overwhelm without retaining much content. Staring at the slides in large lecture halls, I'd allow my literal and figurative focus to slip - sending my mind wandering in various (usually, self-deprecating) directions. Why did everything suddenly feel so difficult? Had I become lazy? Or disinterested? Or disengaged?

I didn't know why I was struggling, but I didn't want my friends or family to see the extent of decline in my health and wellbeing. Assuming I had only myself to blame, I ascribed all the changes to my own failings. To others, perhaps, I seemed successful enough. To me, it seemed I had completely lost control. I began to feel foreign in my body, my environment, and my life. Sensing that something was seriously wrong, and fearing others' judgment, I grew defensive and aggressive - pushing away those closest to me. Internally, I swung from extreme callousness to extreme desperation (always, within a frame of self-criticism).

I managed to make my way through the Master's program I had committed to but, I admit, that was likely the most difficult year of my life. I went into it with a terrible attitude - unable to recognize myself and unfit to appreciate the opportunities available to me. Extreme to say, but I became tormented by my own inability to "get it together" and I got lost in cyclical patterns of obsessive, and negative thoughts. I have never felt so shy and so shameful. In the span of a few short years, I became completely unrecognizable. I felt fearful, and failing, and flailing, and - finally - finished. I cried more during that period than I thought was physiologically possible. More than once, I was frustrated enough to wish I simply wouldn't wake up the next morning. I couldn't accept the knowledge that I had been personally "responsible" for becoming such a waste, and for wasting so much time and opportunity. Too exhausted and confused to push myself anywhere further, with intentionality, I compromised on my other personal and professional plans - essentially pushing "pause" on everything, at the prime of my life.

Earlier, when I'd seen care providers for related complaints, I was informed that dry eye could be easily cured with a regimen of varied eye drops - and that was that. I left without even being screened for anything more severe. This wasn't revisited until years later, when I went in for "reading glasses" and walked out with news that would change my life. I've since worked with 5 specialists. I've been through the painful process of testing hundreds of lenses that can cause irritation without correcting vision, until you finally identify the right fit. Then, you need to be able to afford them. Then, you need to know how to properly care for them. Then, you need to not lose or damage your singular pair of rigid gas permeable (RGP) lenses - worth upwards of several thousand dollars. (I recognize that, while frustrating, my journey was fairly luxurious. I enjoyed huge amounts of support from my family, and retained access to affordable, quality care. I can only begin to imagine how this devastates the lives of so many others, who have to go through more extreme personal and financial acrobatics to even achieve a proper diagnosis.)

Leveraging the organized and self-actualized parts of my personality has enabled me to adapt to this new lifestyle. Now, I'm closer to resembling Rachel than I was for quite some time. Unfortunately, though, I'm still learning my way out of the mental and emotional baggage that came with not understanding - until recently - why I appeared to "break down" before I'd even had time to grow into a quarter-life crisis. Hindsight is 20:20, and it's wonderful to have some justification for what I experienced. However, I'm certainly still rebuilding self-confidence and unlearning self-scrutiny after years of self-blame for complications. In all seriousness, this condition (vision impairment in general) is multifaceted. Vision is so deeply integrated with aspects of our lived, perceived and communicated experience - any interference with that literally shapes the lens through which we view the world.

I can only reflect my own perspective but, recognizing that this is a dynamic and damaging condition, I encourage members of the patient community to keep the following in mind:

1) Be candid with your family members and friends, about your experience. They may not be able to fully understand or empathize, but they need to know that this is more than just a case of blurriness. My relationships drastically improved when I finally explained to people that I have to make certain kinds of accommodations to perceive, navigate, and interact with the world - especially when unable to wear my lenses.

2) Be patient with them, as well. Remember that, for all intents and purposes, this is an "invisible" condition. Until I got contacts, my world looked drastically different and disorienting...to me. To others, though, I still looked just like the Rachel I had always been - in the world and the roles they'd always seen me in. There's no visible cue to help trigger people's understanding of just how physically (but also mentally and emotionally) straining this condition can be.

3) Research your options. For some time I was under the impression that I'd need to undergo a corneal transplant surgery, in order to enjoy normal vision. Given the severity and rate of progression of my Keratoconus, this need not be the only consideration. Many providers and institutions will try to "sell you" on their new tool, technology, or treatment option. Advancements in available solutions are truly stunning, but don't hesitate to find the "fit" that's best for you. If you're not confident in your care, absolutely pursue a second opinion.

4) Get involved in a condition-specific patient or caregiver community. I had no idea how nuanced people's experiences with Keratoconus could be. There are clinical solutions for the clinical manifestations of the impairment; however, the best methods I've encountered for addressing the non-clinical aspects of lived experience, require engaging with others. You may benefit enormously from the sharing of personal best practices, or the shared knowledge that others are all too familiar with the isolating senses and sentiments you may experience.

5) This is not the end of your life. It sounds extreme, and in this case, it's intentionally a bit cheeky. In seriousness, though, many of the patient accounts I've read are dramatic. They describe the ways Keratoconus has damaged people's confidence, or devastated their dreams: lost jobs, ruined relationships, psychological or behavioral decline, etc. Personally, though, I know plenty of people who successfully manage their care and seamlessly move on with the rest of their healthy, active, and vibrant lives. Especially given improving access to improved quality care, this condition is absolutely manageable. Do not let it slow you down.

As an active member of the patient community, I've used my own story to help launch me into more meaningful conversations with others. I find that, while we all navigate this a bit differently, we have much in common and much to learn from each other. To that end, I encourage others with Keratoconus to be patient with themselves and - above all else - to not lose sight of themselves. If ever you need someone to help refresh or reaffirm your point of view, I hope you'll reach out and share your story too.

Rachel Dungan, a keratoconus patient based in Washington D.C., works to promote meaningful and effective patient / public engagement in health research and policy decision-making.

Since winning the inaugural National Keratoconus Foundation (NKCF) Short Film Festival, Rachel has served as an active patient advocate and has spoken at conferences hosted by the Association for Research in Vision and Ophthalmology (ARVO) and the UC Davis Eye Research Institute.

Rachel studied Biobehavioral Health and Civic & Community Engagement (Pennsylvania State University's Schreyer Honors College) before earning a Master of Science in Social Policy (University of Pennsylvania).

Rachel will be speaking at a Congressional Briefing to recognize National Keratoconus Day, in November (2017). Additional details at: EyeResearch.org

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