Catastrophe and Confusion: My Journey as a Medical Mystery
Jessie describes her experience with the healthcare system as a patient who went from a misdiagnosed illness to searching for a correct diagnosis.
It all started with headaches. Little did I know that three years later, some simple headaches would turn into various severe symptoms that would completely change my life.
The more doctors I saw, the more medications I was given. The more medications I was given, the more side effects I had. I quickly learned that I am sensitive to medication and that my symptoms – frequent rashes, intense abdominal pain, tonsil stones, fatigue, night sweats, and more–were not going away overnight.
Just as the pandemic was hitting the United States, I started my search for a diagnosis and began getting tested for various illnesses. After many months, an ER visit, and 10+ medical exams, I was told by a nurse over the phone that I had Crohn’s Disease. I was instructed to pick up a prescription at my local pharmacy that would help relieve some of my symptoms. I asked to speak to my doctor to further understand the diagnosis, yet was told to just take the medication as my doctor was too busy.
Less than 24 hours later, I was carted away via gurney in my university’s library (pretty embarrassing) to travel by ambulance to the nearest hospital. I had an extreme reaction to the medication I was given and had passed out in the library bathroom. I was terrified as I sat alone in the hospital for 6 hours and waited for my mom to fly cross-country to come take care of me. When I called the doctor’s office to explain that I was in the hospital, they said that they’d contact my physician for next steps. I was still sitting in the ER when the office called back to say that the doctor had put in a new prescription to my pharmacy. I was still not allowed to see him, nor was I allowed to ask any questions. That started a fear of medication, as well as a path towards mistreatment I have received.
After that experience, I switched gastroenterologists and started on biologic infusions for Crohn’s disease. I was hopeful that things would turn around now that I had a diagnosis and had set a plan for treatment. Unfortunately, that couldn’t have been further from the case.
My first biologic resulted in another horrible reaction. This time? Extreme itchiness. For around two weeks, I felt like I had been exposed to high traces of poison ivy. I was miserable and didn’t want to ever get another infusion. However, I yielded to my doctor’s advice and started on a different biologic. I received a few infusions, yet did not feel any benefits.
One of my other doctors thought it was strange that I wasn’t feeling any better after months of being on biologics. She recommended that I see a different gastroenterologist in Los Angeles, my hometown. The LA gastroenterologist took one look at my prior reports and labs and said “you don’t have Crohn’s Disease.” I was shocked. It turns out I was not getting any better from the immunosuppressant medications, but rather, I was getting sicker because it was not the correct treatment for me.
I was thoroughly confused—if I didn’t have Crohn’s, what was making me so sick? Why did I have symptoms that presented so similarly to Crohn’s Disease?
As this was going on, my health continued to decline. I was also graduating from college and getting ready for my next stage in life. I had applied to graduate programs in other states and was excited to begin that journey. However, with there being so much uncertainty around my health, I couldn’t fathom switching doctors or starting over in another state without a support system around me. I put in a request to defer my admission to graduate school for a year and focused on getting a job in the state in which I had been living. A few months later, I received an email stating that I would not be offered a deferral–no explanations, reasons, or anything. This was incredibly frustrating after all of my hard work.
I found a job that I would enjoy and spent much of my time trying to find a diagnosis for my symptoms, which continued to worsen. It seemed like I was adding in new symptoms by the month – bleeding, nausea, reflux, you name it. Every month, the old symptoms didn’t go away, but rather, new ones would build.
None of my doctors, even top-rated specialists, have been able to figure out what is going on and why it continues to worsen. I will be travelling to the Mayo Clinic soon to get a full work-up and meet with more experts to hopefully find the root of my issues.
Not having a diagnosis, yet still suffering from a chronic illness, is incredibly challenging. Finding community with others who have chronic illnesses has been helpful, yet I’ve struggled with not having a label to easily encapsulate my experiences. Sometimes, doctors seem to invalidate my experiences because I do not have a diagnosis that ties all of my symptoms together in a nice bow.
As I wait for a diagnosis, I have learned the importance of advocacy–both for myself and for others who struggle with chronic illness. Learning to advocate for myself is something that will undoubtedly help me in the future. While I have had some doctors dismiss and give up on me, I know I have others who will support me and stay with me throughout my journey, and for that, I am forever grateful and hopeful for what is to come.
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