Sad in a Prettier Place

Feature image by James O’Neil for Getty Images

Before I moved from DC to California, Instagram’s creepy algorithm delivered me an image that said something like “moving won’t solve your problems, you’ll just be sad in a prettier place.”

A big reason for my move was the fact that I’m immune compromised. I couldn’t safely exist in a world that has decided to ignore the pandemic that still kills hundreds of people in the U.S. each day unless I moved to a place where I could be outdoors all year to limit my risk. Regardless of what that Instagram post said, I knew moving would at least solve that problem.

In 2022, while everyone else was starting to “move on” from a pandemic that has definitely not moved on from us, I became a medical mystery. People like me don’t get to move on because even a regular virus can send us spiraling into a pit of mysterious symptoms. In January 2022, I got some sort of infection that was not COVID. In a matter of one week and one infection I went from dancing nearly every day, walking my dog, hiking, and swimming regularly to feeling like I was running from simply walking from my couch to the bathroom When I stood up or tried to walk my heart rate would skyrocket to the 150s. Only a few weeks before that I had gotten married in Orlando and walked many miles a day in Disney World and sightseeing on a road trip along the east coast. But that person is gone now.

I thought I was going to die and I was afraid to move, convinced I was on the verge of a stroke or a heart attack.

After that, everything became a blur. I know I went to doctors and did testing but I cannot tell you when or where because I was so damn exhausted all the time that it was a struggle to stay present. Everytime I left my apartment to go to these doctors and tests, my heart responded like I had run a marathon.

In May an endocrinologist told me she had found the answer. My cortisol was dangerously low from a round of prednisone. We treated that with a different steroid: hydrocortisone. And it did help the dizziness and the fatigue enough that the fog started to clear – but it never went away. Once a month I would go to the hospital to sit for a multi-hour test where a nurse would inject me with different chemicals to measure how my body’s hormones responded, to see if I was recovering and ready to come off of the hydrocortisone. In November they said I was fine now and I could slowly wean off of the hydrocortisone. I was healed. Except I wasn’t.

In December when I moved across the country and the physical labor that comes with moving paired with the fact that my cortisol deficiency was supposed to be gone made me acutely aware of how lightheaded I was and how rapid my heart rate was. It had slowed some from the initial highs immediately following the infection, but I regularly felt like I was on the verge of passing out. I saw a cardiologist who told me I clearly had dysautonomia but there wasn’t enough time to do testing before my move. Not to worry though I was moving to an area with some of the best doctors in the world! In fact, if you search US News’s ranking of the Best Hospitals in the World, 40 of them are in California.

But no state full of good doctors and (mostly) blue voters could keep the U.S. medical system from its modus operandi!

We arrived at an empty apartment shortly before Christmas to 80 degree days and palm trees decked out in lights. It seemed like a scene in a movie where the main character goes on a dream vacation to some tropical paradise, but real life meant staying in paradise while learning how to navigate the everyday.

Shortly after the New Year, all of the stress from moving brought on one of the worst autoimmune flare-ups I’ve had in years. It felt like having the flu without the congestion: fevers, intense body aches, cold sweats and chills, intense fatigue. I was so exhausted that I could only stay awake for two or three hours at a time for an entire week. Everything that I needed to do — mail, laundry, unpacking, work — literally piled up around me and slowly closed in on me.

Being incredibly sick in a new city is a good way to realize just how far you are from everything you know. My health insurance had changed so I didn’t know if my medications would be covered. My friends and family now went to bed when my night was just starting. I lost the network of trustworthy doctors and physical therapists that had taken me years to find.

Trying to find new doctors who would listen and take me seriously as a queer, chronically ill, plus size woman felt like playing roulette. A doctor might have great reviews online and then tell me all of my problems would be solved if I just went to the gym. Every new appointment required trying to explain my complex history over and over again. So many doctors were completely dismissive of my concerns or didn’t understand the ways in which my identities intersected with my medical conditions. I had to constantly advocate for myself and fight to be heard but I was already exhausted from fighting my own body.

One particularly pompous doctor dismissed all of my previous diagnoses and symptoms as simply being caused by temporomandibular joint disorder (TMJ). I never said I had any jaw pain! But he cut me off every time I tried to speak, made assumptions about my life and experiences, and proceeded to mansplain my own body to me. It was like he had already made up his mind before I even walked into the room, and nothing I said could sway him from his arrogant position. Another doctor gave me a lecture about a certain diet I should follow without taking any time to learn that almost all of the foods she was recommending are foods my body can’t tolerate.

Thankfully I did find one good doctor who was able to treat my flare up, but it only led to more complications. The treatment caused a different problem and though I could actually stay awake and go back to work, it made the dizziness that plagued me for over a year get worse and launched me into a new effort to solve that mystery. It feels like I’m stuck in a never-ending movie montage of doctors and tests.

One test was supposed to be the final answer, with numerous doctors enthusiastically swearing it would reveal the source of my dizziness and get me on a treatment plan. So after not eating or drinking for many hours, I was strapped to a hospital table a la Frankestein’s monster and covered with electrodes and monitors. They tilted the table into a standing position and waited for my symptoms to appear. And nothing. Nothing happened. The nurse asked me how I was feeling, referring to my symptoms, but I — trying not to cry — said angry. I had felt dizzy and nearly fell over just a few minutes before the test when I stood up from my chair in the waiting room, so why couldn’t that happen now? I told the nurse and doctor that I felt like I had just taken my computer in to have a bug fixed, only for it to not happen when I tried to show the staff what was wrong.

So I was left without answers and with doctors who were officially stumped. One doctor referred to a speciality testing center at Stanford University — the only center of its kind on the entire west coast. But Stanford must have gotten itself confused, because it sent me a form rejecting me as if I had applied for college and not sent a referral for medical care! The letter was incredibly vague with no useful information about why they rejected me, how to appeal, or anything, and they wouldn’t give my doctor more information either. When I called, the best answer I got was “find another clinic.” Well, Stanford likes to boast about two things: this is the only facility of its kind on the entire west coast and Stanford’s medical system has been recognized by the Human Rights Campaign for being LGBT friendly. The next closest clinic is in Salt Lake City Utah, home to the notoriously homophobic Mormon Church. How can a place that calls itself LGBT friendly reject an LGBT patient with no explanation and then tell them to travel to Salt Lake City instead?

The next stop was a different test at an otolaryngologist (ear, nose and throat) who ran me through a strange series of tests and refused to give me my results until I came in person, even though the next available appointment was not for three months. So, you’re telling me you have the results in your hand right now and know if there is something seriously wrong with me and you expect me to wait three months? I did some research and it turns out that this is actually against multiple federal laws (HIPPA and the 21st Century Cares Act) defining patient rights and guaranteeing quick, unimpeded access to results so that patients can have all of the information they need to access the best medical care. I had to get my primary care doctor to help advocate for me and remind this doctor of laws to finally get my results, which actually did find something wrong with me.

I’m still dizzy every day but I’m feeling hopeful for the first time in a year and a half. I have a physical therapy appointment scheduled with a person who specializes in dizziness. I also have appointments with more specialists — but this time I actually have some answers and test results to take with me, and not just a list of mystery symptoms.

It’s been an incredibly difficult, exhausting, and stressful time. Sometimes it seems like I spend every drop of energy I have on going to a doctor or dealing with insurance. The truth looks more like a roller coaster. A TikTok video trend recapping 2023 so far, now that we’re roughly halfway through it, prompted me to look back at the photos on my phone.

It’s true there are times when a lot of it is doctors (I have social media accounts where I post about chronic illness so that’s why I have photos from my doctor visits) or pictures I took at home of my dog or even documenting my Lupus butterfly rash to show my doctor later.

But in between the lulls there are sunsets on California beaches, wildflowers from the super bloom, multiple trips to Disneyland (Disneyland is really great at accessibility and is pretty popular with the disabled community as a result), sea lions, and mountains. There are photos with the few friends I have here that I can safely spend time with outdoors because the weather is always perfect (look if you’re from Southern California and you’re reading this, I know you’re shocked that I would say the weather is always perfect when there were floods and June gloom, and it was “so cold” this winter — but Washington, DC has flood advisories, and heat warnings, and snow storms multiple times a year. I’m sorry, but 50 degrees fahrenheit is not cold). There are amazing foods I got to try because more restaurants here have outdoor dining. There are all the cute dog friends my dog made because my new building actually has a dog park. There’s a trip to Big Bear Lake with gorgeous mountains and an amazing queer-friendly cafe called LuLuBelle’s (please support them if you go to Big Bear, they are so lovely). There’s the hummingbird feeder I hung on my balcony and the beautiful bird friends that like to take advantage of it.

It’s true that moving across the country didn’t solve all of my problems. It did give me more access to outdoor activities to be safer from COVID. But it created new problems, too. But every day — whether I feel up to leaving the house or not — I wake up to flowers, palm trees, and hummingbirds outside my window. I’ve been able to soak in my apartment’s outdoor hot tub several times, which has provided some much needed relief to my joint pain. I have been able to eat outside, walk along the ocean, and see baby sea lions.

I am still recovering from my flare up and the things that piled up. I am still struggling to find new doctors and make new friends. I still don’t know when or if I will ever stop feeling dizzy. So maybe it’s true that moving just made me sad in a prettier place. But maybe that’s the point.

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Katie Reilly

Katie is a disabled queer writer, creator, and activist who spends her days fighting online misogyny, hate, and disinfo and her evening playing with her dog, designing for her Etsy, reading 5 books at once, or collecting too many kinds of tea. Find her across social media at @imkatiereilly.

Katie has written 18 articles for us.

10 Comments

  1. Thank you for sharing and I’m glad you got to move!! I have long Covid and have many similar experiences. So jealous you get to go to Disneyland!!! Sending you hope w docs and all that.

  2. Doncha love how Americans basically have to do all the medical research ourselves and then run into access barriers trying to get what we know we need from “experts” who had maybe an hour of training in topics like menopause and trans needs? Glorious. However, when you find the right doctor, ahhh so good. Glad you’re getting some answers!

  3. Wow, Katie, thank you for sharing your story. I hope your treatment continues to be successful. I work in Medical Records and hear similar disheartening stories from patients all the time. Either it was my organization that let them down or another. We are expected to put our trust in Doctors but one thing my mom told me early on was we *have* to be our own advocate. As patients we can’t be scared to tell medical professionals what we are feeling or what we think our symptoms can be because they certainly don’t think the way we do or feel the way we do. One recommendation I have is to request all your records digitally so you have a copy that can be copied/shared whenever needed and/or sign up for a MyChart. Cause even THAT process can hold up care. I’m saying the last couple of things for the general population as well. – It is great when you find a doctor that listens. Pretty sure mine thinks I’m off my rocker theses days but I don’t care.

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