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What Keeps Me Going as a Pre-Med Student With Chronic Illness

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Throughout my life, I was known as the “accident prone” kid. I was a competitive athlete that managed to get myself badly injured every season. During volleyball season in my sophomore year of high school, I tore the labrum of my right hip. This injury was a pivotal point for my physical health. I had to have surgery to repair the tear which left me in recovery for six months. During this time, I experienced a severe decline in my joint stability.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

In a search for answers, I went through genetic testing at the University of Iowa hospitals and again at Mayo Clinic. I was diagnosed with a connective tissue disorder known as Ehlers-Danlos syndrome (EDS). There is far too little known about this disease. What I do know is there is no cure and the only treatment is pain management paired with exercise rehabilitation. However, exercise is extremely dangerous for my joints.

Over the next few years my body experienced an extreme deterioration; I found myself in pain performing the simplest of tasks and was constantly at risk for a ligament tear or dislocation. Recently I experienced my worst dislocation episode yet. I was getting dressed for work one morning and dislocated my left shoulder, scapula, a rib and my elbow. This type of thing occurs often. It is both unpredictable and utterly excruciating.

I have learned how to advocate for my medical care, reduce my own dislocations, and live despite the physical pain I feel each day. It is due to the extensive research I have conducted on my own, in trying to become as proficient in my genetics as possible that I fell in love with the field. Genetics is ever-changing, mysterious and I want to learn everything about it.

Spring semester 2018, the greatest hospital in the world told me there was nothing they could do for me, but I had never been sicker. I spent my days juggling school while endlessly searching for a diagnosis for my excruciating head and neck pain. The reality of my current circumstances hit me hard. I had to decide whether or not to drop out of UMR, at least for the semester. I was failing my classes, I was in pain and I was depressed. I had multiple meetings with my advisor to decide what to do.

Everyone had an opinion. Everyone wanted to help but no one could take my pain away. My mom was terrified for me and she felt helpless while trying to advocate for me from home in Iowa. I was overwhelmed and disappointed in myself. I decided to stay the semester but take a lighter load of classes. I needed to at least try. I was just trying to make it through each day, one day at a time.

Finally, after feeling like all hope was lost, I found a surgeon in Milwaukee, Wisconsin that not only believed in my pain but knew exactly what was wrong; my EDS had affected the tissue that supports and holds my cerebellum in place, in other words, my brain had fallen unto my spinal canal and was being crushed by spine. In the midst of the chaos of school, I scheduled a double brain and spinal surgery for two days after my final exams.

I fell into the arms of my best friend, overcome with emotion. I allowed myself to be vulnerable and comforted as the powerful nausea and breathtaking anxiety of my uncertain future took over. As a once independent young adult, I began to rely on the help of my friends and family in ways I did not expect. I was so lucky to have all of them by my side.

The looming Chiari malformation decompression surgery plus cervical spinal stenosis surgery were both a glimmer of hope as well as a source of panic. I knew I could not keep living in pain, but I was becoming consumed by the fear of the surgery. Throughout the semester I felt defeated physically, mentally and emotionally. I believed I was a disappointment as I watched my peers continue to succeed as I slipped further and further behind. I felt like a failure as a daughter when I called my mom to break the news I needed major surgery and could no longer be the independent young adult I desperately longed to be. I felt like a failure on the phone with my insurance company when they told me it would be a $300,000 surgery. I felt like a failure as a friend when I was too sick to be one.

When it came time for surgery I tearfully said goodbye to my mother, grandmother, and best friend for what I feared was the last time. By grace I came through. I arrived in recovery stronger than ever. I was determined to fight back.

It was a long road to recovery between the complications from surgery, returning to school, and facing my other health conditions that were neglected in the previous months. I am finally back on track with my academics and my head and neck feel like new. I still struggle each day with my EDS, but I am learning to multitask managing my healthcare while also pursuing my career goals.

Though I have and will continue to have health issues in my life, I have been given the opportunity to experience health care from the patient perspective and I refuse to let these invaluable lessons be taken for granted. I have witnessed health care providers with empathy that seems to never end and also those that will not give me the time of day. Because of these experiences, I know the kind of healthcare professional I want to become and the kind my future patients deserve.

I want to be a provider that instills hope, healing and strength to her patients. I want to be a provider that does not give up on her patients. Lastly, I want to be a provider that heals. As a lifelong patient, I have seen some of the limitations within the healthcare system.

There are too many stories like mine where patients are turned away and required to find a diagnosis alone. There are too many insurance companies in search of a big payday instead of helping the patient obtain affordable care. Right now, the American healthcare system is broken. People are suffering, treatments are amiss and communication between healthcare providers is disconnected. This creates a space for valuable information to get lost.

If any of my providers had taken the time to look at the whole picture of me as a patient, instead of simply suggesting I had migraines, drank too much caffeine or was sleep deprived (Which describes a typical college student, right?), I might have been diagnosed a year earlier and my GPA as well as my mental health would have certainly been more intact. There are incredible healthcare providers out there. My life has been saved by many of them, but the system itself is flawed.

Healing is personal. It is almost never a linear process. I have had many people throughout my life, even recently, tell me that I will not succeed, I will not achieve my dreams, and my health will hold me back. I have decided I will no longer listen to those who wish to deter me from my goals, and I will achieve my dreams — not despite my illness, but because of it. My path to success will not be linear, easy or similar to others, but I am determined to make the most of it.

None of this would have been possible without the never-ending support from my family and friends. Even on my worst days they never gave up on me. I am resilient. I am climbing each mountain and valley that comes my way. I am learning that the view from the top is worth the climb, however winding the road. I will use my own personal experience as a patient when treating patients in the future. I am still chronically surviving.

Getty image by Lightfield Studios.

Originally published: May 7, 2019
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