I was going blind, until I never was.

Let me spare you the suspense: there was never anything wrong with my vision. This isn’t a story about me losing my sight. It is a story about the frustration of navigating medical systems and doctors’ offices and the unnecessary toll that takes on patients. I haven’t written about lupus in a while, and this was a frustrating enough of an experience that I felt like it warranted a post, both so y’all know what’s been going on with me and, as always, to help make the struggle of invisible illnesses a little more visible.

So, just a little background: I was diagnosed with lupus in fall 2015. I was really lucky and got a diagnosis really quickly and had a really dedicated PA that advocated for me and helped keep me safe. I’ve moved a few times since my first 6 months of care and, since then, the level of care I’ve received has fluctuated widely but, overall, I’ve stayed safe and have learned to be my own best advocate in the face of bureaucratic incompetence and over-taxed medical systems.

A big part of why I’ve stayed safe is because I’ve been on a medication called Plaquenil. It briefly gained fame when Trump claimed it would help with Covid-19 but, in general, it is used to help fight malaria, to reduce inflammation related to rheumatoid arthritis, and, most importantly for me, help reduce the harmful effects of lupus. The drug essentially tricks my body into thinking it has malaria. As a result, my immune system spends all its energy fighting fake-malaria instead of attacking my organs.

There’s one major side effect of Plaquenil that is pretty rare but doctors take pretty seriously: it has the potential to cause irreversible macular degeneration and blindness. The risk for this goes up significantly after 5–6 years of use (I’ve been on it for 7). Every year, my rheumatologist requires me to get an extensive eye screening to ensure my eyes haven’t been damaged in order for me to continue to take Plaquenil. Depending on the eye doctor and the sophistication of their machines, the discomfort of these tests range wildly. But, overall, they’re mostly the same. You do a standard eye exam, they take a very fancy picture of your eye via an OCT (Optical Coherence Tomography), and you perform a VFT (Visual Field Test) to test your peripheral vision.

This past December, I went in for my annual screening and I failed my VFT in my right eye. They weren’t super worried, though, as they said this could happen if one of your eyes was especially tired. They scheduled me to come in the following week to retest. I came in to retest on December 23, right before the holidays. During the VFT, you place your eye up against a little lens. You watch a bright light in the middle of your field of vision and you hold a clicker. As lights flash around the central light, you’re supposed to depress the clicker to indicate you’ve seen the light. As I was taking the VFT for a second time, though, I noticed that I was still not clicking very often for flashes in the lower-quadrant of my right eye. I started getting nervous.

As I left, the tech told me that the doctor would review and get back to me. Because it was right before the holidays, I figured I’d hear back after Christmas. Christmas came and went with no word. Then, New Years. As I returned to work in the new year, it was on my radar to call the doctor to check in. But, I assumed, no news was good news. A week into the new year, I finally called. The receptionist noted that it looked like the doctor hadn’t reviewed my file yet but she’d put in a request and they’d call me back. Two weeks passed and no one called. I should have been proactive and called sooner but I was especially busy at work and, whenever I remember to call, it was late enough in the day that the office was closed. When I did finally call back on a Friday in the middle of January, the receptionist noted that, somehow, her ping in the system never went through to the doctor. But, she’d ping again now and the doctor would review and get back to me.

The next day, I received a call while at the gym. Unfortunately, the doctor said, I’d failed again, which was getting more odd. They’d need to reschedule me for a third VFT and we’d go from there. Their next available date was in a month. I asked if my situation was dire enough that I should try to get in sooner, but she was noncommittal. I was starting to get quite worried at this point. I used my finger to test my own peripheral vision. To my untrained eye, I seemed fine? But, the data was suggesting otherwise. All of a sudden, as I felt like I did when I was first diagnosed, I was worried that my body was slowly degrading. The optometrist gave me no further instructions but to wait for 4–5 weeks until my appointment.

Because I was starting to feel more concerned, I decided to be proactive and email my rheumatologist. My optometrist was supposed to fax over any tests but, it turns out, they never did. So, I looped them in on the situation and asked them: “should I try to get in somewhere else sooner? Do you think this is a big deal?” My rheumatologist instructed me to immediately stop taking my Plaquenil until I could get retested and she said she’d call in a referral to a new eye clinic. I waited a week, but the new eye clinic never called. I finally called the eye clinic and asked about the status of my referral. They said they had no record of a referral, likely because their fax number listed online was incorrect. I explained my situation and they allowed me to book an appointment for myself later that week. They gave me their revised fax number so my doctor could fax over an official referral. I arrived for my appointment on Thursday. They confirmed they’d received the referral and I was good to go.

The tech began to run the standard eye test and then she brought out the drops to dilate my eyes. “Wait,” I told her. “Don’t you usually need to run the OCT and VFT before dilation?” “What?” She asked. “We just have you down for a standard eye exam.” I explained that I was supposed to be here for an OCT and a VFT. “You need a referral for that,” she told me. It was at this point that my usual upbeat demeanor began to fade. I told her I confirmed with the intake receptionist today that they had indeed received my referral from my rheumatologist prior to this appointment. “Well, unfortunately, that is not the type of appointment you were booked for and none of the machines are free for you to take those tests.” It wasn’t this poor tech’s fault; she scurried out of the office and tried her damnedest to get someone to run these tests for me. But that doesn’t change the fact that, despite my diligence and double checking, somehow, I was still not scheduled for the necessary tests to give me the information I needed about my eyesight.

Had irreparable damage happened to my eyes? When could I go back on my Plaquenil? At this point, I had been off of Plaquenil for over a week and my joints were starting to ache and my feet, knees, and fingers were sore around the clock. After some heavy-handed and pointed questions, I was allowed to see the primary ophthalmologist and voice my concerns. She promised me that they’d “try to get me in within 1–2 weeks” to run the necessary tests. In the meantime, she said, it’d be helpful if the first optometrist faxed over the previous failed tests. She handed me a card with a fax number that I knew was the broken fax number. I didn’t even try to inform her at that time that her business card had outdated information. I just got back in touch with the first optometrist and gave them the fax number I had found on my own. To my luck, they were able to actually get me in the very next day to run the necessary tests and, because I’d applied the necessary pressure, the doctor made sure to call me before the end of the day to go over the results.

It turns out, the first two tests were faulty. My eyes were fine. I passed the test. She told me that she was comfortable authorizing me to go back on Plaquenil and that she would fax the results to my rheumatologist. On my end, I emailed my rheumatologist to tell them the good news, to ask that they look out for the fax, and to ask that they refill my Plaquenil prescription. It’s been 3 weeks since then. They’ve never emailed me back. But, they must have authorized the prescription because, once I requested it through the mail order system, it did arrive at my house finally.

So, all’s well that ends well, I guess. But, this is a story of how I spent 6 weeks worried that I might be going blind and wasted countless hours following up with several doctors who, despite their stated commitment to patient health, can’t seem to overcome their own bureaucratic incompetence. Blindness never truly did exist for me, except for the space it occupied in my head and for the space it claimed in my schedule, all in the search of confirmation of a diagnosis that never was. Invisible illnesses tend to work like this: they can take up so much space and so much time and yet, like the flashes in my first two Visual Field Tests, they’re very easy to miss. So, pay attention to your body. Best your best advocate. Check in on your friends. And, always confirm that the ping or the fax went through.