The ER Visit That Made Me Realize I Need to Fight the Stigma of Lyme Disease


In January of 2017, I was diagnosed with Lyme disease after being mysteriously ill for about a year. As soon as it was discovered, I immediately began a homeopathic protocol to treat it. Three days after starting the protocol, I was experiencing chest pain, heart palpitations, abnormally fast heart rate and high blood pressure. I visited a nearby urgent care that was concerned about my vitals, so I was sent to the local emergency room.

I was aware of what was I was likely going to experience at the emergency room. The staff was going to run a battery of tests and then return to me with no answers since Lyme disease often cannot be uncovered using routine blood tests, x-rays and ultrasounds. They were then going to send me home and say to me, “Come back if your symptoms persist or worsen.” However, my treatment at the emergency room was not what I expected.

 

When I arrived, they performed their routine of asking me what symptoms I was having and if there was anything I did to induce them. When I explained my symptoms, they listened intently, but when I mentioned Lyme disease and the treatment I was on, I sensed a sudden shift of mood in the room. I was puzzled as to why the staff abruptly seemed agitated with me. I knew there was a stigma that surrounded the diagnosis of Lyme disease, but I assumed I would never experience that. I tested positively for the disease, so why would my condition be questioned? In addition, I thought they would be supportive of the fact that I was seeking treatment for the disease, but it did not appear that way.

As soon as I finished explaining my symptoms and conditions, I was bombarded with a lecture and a series of questions about my diagnosis. I was told I should never take natural medicines because they are not approved by the CDC and may be toxic. I had a powerful urge to say that the CDC approves many medications that have harmful side effects and it was the only treatment I had access to, but I stayed silent. Also, it was explained to me in an extremely rude, inconsiderate manner that I should not trust the diagnosis I was provided because “some doctors are willing to diagnose any patient with chronic Lyme disease if all other tests are negative or inconclusive. You should really research other diagnoses.”

What they were saying to me was a lot to take in at once. Basically, my intelligence was questioned for taking a homeopathic treatment and accepting a diagnosis of chronic Lyme disease. In addition, I was livid that they suggest I go through more testing for diseases I likely did not have.

They did not understand that for the past year, I had seen specialist after specialist trying to find out what was wrong with me. They did not understand that I had had so many tests conducted on me already: an upper endoscopy, a stomach/duodenum biopsy, stress test, heart ultrasound, MRI of my brain and spinal cord, 24-hour heart rate observation, 24-hour urine collection and endless blood tests for celiac disease, thyroid conditions, lupus, multiple sclerosis, myasthenia gravis and Wilson’s disease, to name a few. They did not understand the disappointment and frustration I felt every time a specialist was unable to find out what was causing my symptoms and dismissed me from their care. They did not understand my perspective of my journey and I had never felt so outraged and alone in my entire life.

If my vitals had improved and I did not have the fear of having a heart attack, I would have ripped off my hospital gown, grabbed my belongings and stormed out of that place before anyone would have the chance to stop me.

During that hospital visit, they ran some routine blood tests and took an x-ray of my chest as a precaution. As expected, nothing abnormal was present except for my vitals, so I was sent home that night, thankfully. If the staff would not have discharged me, I would have requested to be. I was not going to continue to subject myself to their attitudes about me and what I have chosen to do to improve my health.

I left the emergency room that night experiencing a multitude of intense emotions – some of them being inexplicable. On my drive home, I was sobbing uncontrollably and I had suicidal thoughts coursing through my mind. My emergency room visit had pried my eyes open with a crowbar and I felt as if my new reality would be too much for me to face. I was being submerged into a new life and identity and wanted to flee. I was going continue to struggle with the symptoms of chronic Lyme disease, but also constant criticism and explaining myself to others. I did not believe I was mentally or physically strong enough to go through life defending myself all the time. I did not want to be a controversial person – I was used to being quiet and blending in with everyone else. Now, my life was requiring the complete opposite and I was not prepared to do any such thing.

However, I began to realize I need to fight this battle as vigorously as I can. During my emergency room visit, I had discovered the hostility surrounding my condition and its victims. Later that night, I had discovered it was acceptable to experience the emotions that overcame me and that there were many others out there who have endured the same thing. I had realized my responsibility was to overcome Lyme disease. It was not my responsibility to make people feel comfortable about the disease that afflicts me.

In addition, after the abominable treatment I received, I discovered I had another responsibility: I needed to dedicate myself to battling and talking about the stigma surrounding my disease. I decided I was not going to stand by and let others with Lyme disease endure the same treatment I did that night. Nobody deserves to have their intelligence questioned, especially when they are already physically ill.

In addition, people fighting for Lyme disease treatment are only trying to improve symptoms of the condition and it is inexcusable that so many medical professionals are standing in their way of doing so. Some people with Lyme disease are dying because they are denied access to treatment. I know if I was unable to receive treatment, I would have been severely affected or possibly dead within a few years with the rapid decline I experienced.

Nobody should be denied treatment for a disease that can be incredibly catastrophic if ignored, and I determined I was going to resist this neglect and advocate for medical treatment and acceptance of Lyme disease patients. For Lyme disease patients who have had similar encounters, I encourage you to share your experiences and advocate for acceptance of our illness in the medical community and society as a whole. If we do so, maybe the futures of those who have Lyme disease will be brighter.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Chad Baker/Jason Reed/Ryan McVay.

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