Seeing the Problems of American Healthcare With Clear Eyes

  On July 4th, 2015, I woke up in a tent in Rhode Island with intense eye pain. At 10 years old, I had never experienced anything like this before and was definitely not expecting this on my annual family trip. That morning began my seven year struggle with a chronic eye condition and my first experience with the problems of the healthcare system. This struggle even motivated me to become a doctor myself, with the goal of doing everything I can to prevent this from happening to someone else. 

That day on July 4th, I woke up with a stye, which is a painful bump on the eyelid that is usually caused by a blocked gland. Eventually, the stye went away, but two or three took its place and soon, both eyes were affected. My mom started taking me to the eye doctor because my eyes would be so swollen and painful that I could barely open them. We ended up going to all the eye doctors in a 25 mile radius and each doctor gave a different diagnosis, different treatment, and none of them helped. My favorite of the incorrect diagnoses was that I was allergic to the Demodex mites on my eyelids. Unfortunately, the doctor showed my mom and I what these mites looked like. Not only was that diagnosis incorrect, but the doctor also helped initiate my fear of bugs (please spare yourself and do not look these up). This leads me to my first problem with the healthcare system, misdiagnosis. According to Johns Hopkins, “an estimated 795,000 Americans die or are permanently disabled by diagnostic error each year” making it increasingly more important for improved diagnostic technology and communication training for physicians. Also, this number is just the patients who were permanently disabled, which doesn’t include the potential thousands of people who have experienced pain, emotional distress, and financial hardship because of these diagnoses. 

In late 2015 into 2016, I began to experience a gritty sensation in my right eye, almost like I constantly had an eyelash in it. My eyeball also was almost completely red, with little white showing. At that time, I visited the dermatologist for acne and she suggested that I could have ocular rosacea because of my red, watery, and swollen eyes. This time, I was sent to a new eye doctor for that treatment. With this doctor, I was diagnosed with chronic conjunctivitis (pink eye), blepharitis (inflamed eyelids), ocular rosacea, and corneal ulcers. The ulcers were an extreme concern because they could cause permanent damage to my eyes such as glaucoma or blindness. Because of this, I was sent to a cornea specialist who prescribed me steroid eye drops. I was on this steroid for almost a year and every time I went off the medication, my ulcers came back. The steroids were a double edged sword though, because prolonged use would cause the same things that having the ulcers would. I struggled with on and off ulcers and styes for years. Then came the COVID-19 pandemic. My specialist was still working, but I had to do virtual calls for pressing issues. This was a huge problem at the start of the pandemic and with virtual healthcare in general. There is no way a physician can help someone without a physical exam, especially when a small screen and blurry camera is involved. There I was, holding my eye up to the camera, pulling my eyelids open, and trying to describe my pain. This led to random prescriptions of medications she thought would help when she couldn’t even see the damage being done to my corneas. Although the pandemic was unprecedented, this was not the way to go about care and I condemn the policies that made it that way. Once I was able to convince my doctor that my eyes really were bad again, I was able to go to a real office with one ophthalmoscope in the middle of a large room and not even my mom was allowed to come in with me. The pandemic really dispelled the trust I had in my doctor because she no longer believed that my pain was real just because I had been struggling for so long and she didn’t know how to help me. This patient blaming is something I will always be conscious of when I become a doctor because I had never felt so small in those times. According to a study by Mass General Hospital Center for Quantitative Health, trust in physicians “decreased from 71.5% in April 2020 to 40.1% in January 2024” showing that a lot of patients felt similar to me in those times. The pandemic was difficult for everyone but more policies trying to reduce burn out in physicians and increased empathy training for students and physicians should be in place to avoid this. 

Once offices began to open again, I began a last-stitch experimental treatment my doctor wanted to try. This treatment is called impulsed light therapy (IPL) and uses pulsed light to treat many different dermatological conditions, but usually has cosmetic purposes. When bringing this treatment to insurance, they saw an experiment (never done on children) and cosmetic and turned our coverage away without understanding that this could help end my years of suffering. After many appeals, it was determined that we would pay $1,000 per treatment up until 5 treatments where they would be free from then on. The first steps of the treatment were to stick metal cups under my eyelids to protect my eyes from the light and cover my face in ultrasound gel. The treatment lasted for about 30 minutes with each pulse feeling like a rubber band being snapped against my face. I will never forget the 7 treatments I went through and the sickening pop from the cups being removed from my eyeballs from the suction. The unbelievable costs of this procedure and others are another downfall of the U.S. healthcare system. According to Cornell, about 100 million Americans are in medical debt and altogether owe $220 billion. This is a devastating statistic and often plays a role in the medical mistrust issue stated previously. With costs like this, people will delay medical treatment and prolong their own suffering.

This is Rhett McLaughlin from the Youtube channel Good Mythical Morning, wearing corneal shields from IPL done for his dry eye treatment. He discusses a similar treatment plan as me and the insurance costs of the treatment in his podcast, Ear Biscuits.

The final treatment tried by my cornea specialist was steroid shots into my eyelids which were painful, gave me black eyes, caused my eyelashes to fall out, and left me with permanent scars. The desperation my family and I felt led us to look for other doctors and after about a year, I got an appointment with Tufts Medical Center. Those doctors listened to my symptoms, noticed triggers, and heard my pain with compassion. In 2022, they prescribed me a dry eye drop called Restasis and birth control pills because they noticed my issues were tied to my hormones. To this day, I take one pill and one drop a day and haven’t had a problem since. One pill and one eye drop saved my eyesight. One pill and one eye drop saved my family from being a part of the $200 million Americans in medical debt. I am forever grateful for the doctors at Tufts but the scars from American healthcare have already left their mark. Despite this, I am one of the lucky ones and am excited for the day that I can become a doctor and do my part to end the suffering.