Ten Doctors, Two States, One Invisible Illness
It took ten doctors, one trauma-based nurse, two states, one move, quitting my job, two Covid infections, three different psychiatric medications, one day at a mental health crisis center, and three years for me to receive my diagnosis of Long Covid.
I first noticed it in my feet. Tingly, buzzing, like bees poking under my skin. It was Sept. 7, 2021, I woke up having finished my first 30-hour work week at Freestone Climbing Gym, where I checked people in at the front desk before teaching children how to climb in the evening.
The previous spring, I graduated from the University of Montana School of Journalism. I spent my fifth year of college juggling climbing trips and classes over zoom from my bedroom. I was now working five to six days a week on my feet.
This is why I am tired, I assure myself. The transition is hard.
However, this tiredness felt different. As I walked into my bathroom, less than five feet from my room I noticed my limbs were stiff like cement with every step. I felt achy and out of breath. As I brushed my teeth, I had to grab both ends of the counter for support.
Gravity was no longer weightless; it sat on my shoulders pulling me down the second my torso wasn’t parallel to the ground. My spine felt like jello, I was fighting to hold my head up. I forced myself to walk into the kitchen and make a cup of coffee. Then, I zombie-walked back to my room, a steaming cup of black coffee in my hand, and crawled back under the sheets. The tingling travelled from my feet to my shins, my hands were clammy.
This became my routine for the next three days, sleeping ten-plus hours and continuing to wake up in an energy-less fog, despite doing nothing but lying in bed. Eventually, I dragged my body to the Western Montana Clinic at Westgate Mall.
It was my first time at urgent care and the first doctor I would see.
“I’m so fatigued.” I told the doctor.
He ran a complete blood count (CBC) test to check my red and white blood cells. He tested me for mono and showed me how to make an account on MyChart. He ordered me to rest until I felt better.
All the blood tests came back normal. Eventually I forced myself to go back to work where the first few shifts, I felt disassociated and exhausted standing behind the front desk. My hands were sweating profusely and my body tingled. It took four days for the fog, fatigue and buzzing to slowly drift away.
The second doctor
Weeks passed, the leaves turned orange and highlighter-yellow, and on Oct. 29, I woke up to feel my feet buzzing again.
“I’m exhausted and have been for several days,” I explained to the second doctor. I was hunched over on a cold exam table at the Providence Urgent Care — Grant Creek in Missoula, Montana.
He suggested a Covid test and shoved a one headed Q-tip up both nostrils as I fought back watery eyes. Then, he left the room for a painfully slow 15 minutes.
“Your test was negative,” he said.
It’s the second negative Covid test I’d received since my first positive one on Nov. 3, 2020, election day in Montana. I was relieved yet frightened. Part of me hoped it would be positive because then I would have an explanation. “My feet are tingly, and I can’t think straight,” I explained to him.
He crossed his arms, “That’s weird. I’m not sure. How can I help?”
“What should I do?” I asked him.
He sighed worriedly, “You need to get a primary care provider. You need to establish care here.”
I thanked him and left. I did not establish care. I spent Halloween laying on the couch in the living room of the four-bedroom house I shared with three roommates: one climber, one musician and one baker.
I rested in my pink tie-dye pajama shorts and Nirvana shirt, watching the Jaws films back-to-back. My new Halloween costume mocked me from my room. Within a few days, the fog and fatigue slowly drifted away.
November through March, I worked five to six days a week, climbing most days after work. I spent all weekend in bed, or, if I felt okay, I bouldered outside in Lost Horse Creek in the Bitterroot Valley, south of Missoula. I learned to love bouldering because I could lay on a crash pad in between climbs, my body parallel to the ground. On weekdays, in between my front desk shifts and teaching kids, I lay in bed in a dark room and did not exert myself.
But nearly every month, randomly, I woke up in fog, my feet buzzing and my body impossibly heavy. When this happened, I texted my boss and called out of work.
I never ever used to do this. I was taught, you go to school or work unless you’re throwing up, feverish or cannot walk.
My boss always responded with empathy and care and assured me that I should rest until I felt better. I never got a chance to thank him for this. Any other job, I would have been fired. I spent four to five days lying in bed, sleeping, watching movies, or reading; I was barely able to do much else.
The third doctor
In early March 2022, I was accepted to the SheMovesMountains mentorship program. SheMovesMountains is a guiding business meant to empower and educate women (cis, trans) through technical outdoor clinics and community events. I traveled to Smith Rock State Park in my home state of Oregon two weekends in a row. I worked the four days between the two trips. I did not rest. I didn’t have time to.
A few days after getting back to Missoula, as I brushed my teeth after waking up, I began to feel completely disassociated.
It’ll go away, I told myself.
The next several weeks, I began to feel more and more out of my body. Climbing began to feel harder and harder. I decided to only climb one to two days a week. I researched doctors in the Missoula area, calling the Providence Women’s Care and Family Wellness to set up an appointment.
“Have you been to urgent care?” The woman working the front desks asked me.
“Yes, several times.”
“Okay, our first availability is in August. We prioritize existing patients.”
It’s April. This won’t work.
“How can I get in sooner?”
“You can fill out the paperwork and bring it in,” she told me.
“Okay, I’ll do that today.”
“Oh!” The front desk lady sounds shocked. “Sure.”
Did she not believe me when I told her that I do not feel good?
They emailed me paperwork. I filled it out and dropped it off the same day. I called them again and asked to be put on their cancellation list after my mother suggested it to me. The woman with the clinic called me the next day; I scheduled an appointment for April 26. One of my bosses enthusiastically agreed to cover my shift.
My first appointment with my new primary provider (PCP) was a physical checkup. When the exam was over, I moved from the exam table to a plastic chair next to my doctor. She began typing and staring at the computer screen before asking me if I had any questions.
This is it. I stare at her, my brain attempting to pull words from the fog.
“Yes. I’m struggling with fatigue. No matter what I do, it won’t go away. I feel tingly and foggy headed. I’m only twenty-three, it concerns me.”
She stares directly at the computer before turning to me. “Fatigue is a broad symptom,” she says. “It is also a symptom of depression. We can run some other tests to see if we find anything. But maybe we should try antidepressants.”
I didn’t like this response. I’ve been living with grief since I was three. I’ve struggled with depression since I was in high school, but I’d never had depression cause debilitating physical symptoms. It wasn’t that I didn’t want to go into work, it was that it took everything in me to mentally push through a two-to-four-hour shift because I felt so physically depleted. My coping mechanisms such as climbing, skiing, hiking usually made me feel better and were instead making me feel worse.
But she was the doctor. I agreed. I didn’t know I was allowed to demand more. As I was leaving, she said, “This isn’t goodbye, I will check in on you.”
I drove to the lab at Providence St. Patrick Hospital immediately after, where they did some blood tests. Once I got home, I walked into the living room and laid face down on the couch. My symptoms were bubbling up again.
My brain is spiraling back and forth like a Ping-Pong match: “This is depression and anxiety,” and “This is something different.” I couldn’t decide.
A few hours later, my doctor sent me a message. My vitamin D levels were slightly low. She told me, “This is the reason for your fatigue.”
I was born and raised in Olympia, Washington before moving to Portland, Oregon, when I was 11. I grew up under a near constant shadow of rain and grey clouds. I’ve been low on vitamin D my entire life. I stared at my results, which were one number lower than the normal amount for an average person.
I have never felt like this before. A part of me felt this was wrong and a lazy, wastebucket diagnosis from my doctor.
But I didn’t know anything. So, I began taking 1000 IUs of vitamin D daily. I told myself I was depressed; this was why I felt so awful.
A few weeks later, my dear friend from journalism school came into town. As per routine, she called me and asked to spend the night at my house. We had met in 2019 and quickly clicked. Hazel is a vibrant, brilliant, creative and outgoing outdoor enthusiast who loves nothing more than a day in the mountains, whether it’s climbing, skiing, backpacking or rafting. She’s easygoing, brutally honest and hilarious.
The morning after sleeping eight-plus hours, we went to a popular breakfast spot. I was supposed to go into work a few hours after but was feeling horrible. As we sat at the booth and awaited our brunch, sipping coffee, Hazel looked at me.
“Em, are you ok?”
I looked up. Hazel knows me super well. She could tell something was off. I explained how I was feeling and that I wasn’t sure if it was depression or something else.
“Have you thought about going home?” she asked me.
I remember thinking that it wasn’t an option. I had a job, I had a life. I was determined to power through. Hazel went through a serious health issue when she was 19. She had a sense of maturity that a lot of people I was around lacked. And that I lacked. She was willing to have a serious conversation with me and cross the boundary because of what she had been through.
“Em. You need to take care of yourself. If these doctors aren’t helping you or believing you, it’s okay to go back to Oregon and get help. Your family will be there for you.” She explained that my job didn’t matter right now, neither did climbing. I deserved an answer and I needed help with whatever was going on.
She was the first person to say this to me and the only one of my friends to say, “It’s okay to leave your job and your life and take a breather.”
The nurse practitioner
After doctor three was adamant about my depression, I decided I wanted to see a specific nurse practitioner with Ava Health in Missoula who offered genetic testing for psychiatric medication. I’d considered every possible treatment and while I wasn’t convinced my symptoms were all depression-related, I was desperate. But I didn’t want my body to be a guinea pig for medications. I’d read that genetic testing could help offer a more concrete answer for which psychiatric medication would be best suited for my body. I scheduled an appointment and reported to a separate clinic where I explained my symptoms. The nurse appeared alarmed when I stated how fatigued I felt. She asked me if I’d had my iron, vitamin D and thyroid levels checked. This confused me and felt contradictory to what every doctor had told me. When I said, “Yes,” she smiled and agreed to prescribe me medication. The test involved a swab inside my cheek and I’d receive my results in two weeks.
My fatigue only got worse. At this point, my main focus went from progressing my fitness to just getting through the shifts I could manage. I called out sick often. My brain was always foggy. I felt weak, plagued by horrible jet lag-like fatigue and nausea.
When I was at work, I found creative ways to avoid standing up right. I leaned against the wall; I sat on the floor while working with kids as they almost always wanted to boulder. The moment I came home, I resorted to my bed. I declined or postponed climbing trips.
I could not shake the fatigue. I was planning my days around when I could rest, and if I didn’t, my body would scream at me. I tried everything to rest. I no longer went climbing. I slept 10 to 12 hours a night. I ate more, drank more water and took naps. But none of it was enough.
New symptoms had started too. The floor would sometimes move under my feet as I walked. I had trouble balancing. I could only climb a small boulder route or two before I was overcome with brain fog. My heart would race. There was a long hallway from the gym to the bathrooms, and I had to place a hand on the wall to keep my balance when walking down it. I felt like I was dying, constantly on the verge of fainting. One night, after making dinner, I felt an overwhelming sensation down my spine and around my brain as if someone was pulling down my spine or attaching a snorkel mask around my head. I immediately laid down. Within a few hours, it went away.
In late April, my work schedule shifted over to summer hours as school was nearly out. My front desk shifts were over. I only had work from four to six in the evening. A two-hour shift normally would have been easy for me. It was still too much.
When I wasn’t working, I spent all day in bed, only getting up for meals. Every day around 2:30 p.m., my heart would begin to pound. I was plagued with fear about having to push my body through my symptoms. Many of my co-workers who had known me since July 2020 began to ask me if I was okay.
They knew me as a bubbly, warm, friendly, overly-stoked-about-everything, wildly goofy and silly human being. Now all my energy went into just being at work and pretending I felt okay and wasn’t terrified.
On April 30, 2022, my roommate invited me to climb. A part of me wanted to prove to myself that I wasn’t crazy, that there was something wrong. I went to Freestone. I climbed for three hours. I hadn’t climbed like that since mid-March. Afterwards, we went to a brewery for drinks and pizza. As we stood in the line, the sensation down my spine began. My heart began to race.
It’s depression, Emma.
But the next day I woke up and could barely move. My entire body felt like it was made of battery acid. As if I’d been poisoned. I felt so depleted. I spent the entire day in bed, watching movies. At 5 p.m., I got up to use the bathroom. The sensations around my head and down my spine started again. My heart began to race. I forgot where I was. I stared into the mirror and began to panic.
The next three doctors
Two hours later, I was in the emergency room. I laid on a hospital bed with three emergency room doctors surrounding me, one administering an anti-anxiety medication through an IV. I was completely convinced I was dying. They ran a CT scan after I complained of the head and spine sensations. It came back normal.
They hovered around me, staring at me as if I were psychotic.
“I’m so fatigued, all the time,” I told them in between hyperventilating, my eyelids fluttering profusely and my hands twitching.
They gave me a pregnancy test even though I told them I knew for certain I was not pregnant. I had one drink that day, so they tested my BAC.
“You have anxiety,” the doctor administering my IV said. “I’ve seen people drink to medicate. I don’t want to see this happen to you.” I left the hospital with no clear answers except to go back and see my PCP again.
Yes, I am anxious, but it’s because I feel sick, I feel like I’m dying, and no one is taking me seriously.
I went on medical leave from work. I called my doctor and scheduled a follow up appointment for May 20. It had been nine months since I’d seen the first doctor. I had been juggling work and living in a constant state of wavering, unpredictable fatigue that no doctor could provide an explanation for since December 2020. I was completely burnt out mentally and physically, becoming a ghost of the person I knew myself to be. When I told my mom, she insisted she be present on speaker phone during the appointment. At the appointment, I sat in the same plastic chair next to my doctor who found my low vitamin D levels as she stared at the computer screen again, my mom on speaker on my phone.
“What’s going on Emma?” my doctor asked.
“I’m fatigued. It’s not getting better. This has been going on for a while.”
“Emma, your depression levels are much higher than they were last time,” she said. She referred to the mental health assessment I filled out before both appointments. “I think we should try Lexapro.”
“Excuse me,” my mother’s voice came on over the phone. “Can I say something?”
“Sure,” my doctor said.
“This is NOT her normal,” my mother said, politely but clearly enraged too. “Emma is active, a go-getter, independent, lively. She can’t even go into work for a two-hour shift. There is something wrong with her. We’ve already lost a child to leukemia. This is the family where weird medical stuff happens. You need to test her for everything. Epstein-Barr, mono, everything.”
In a monotone, my doctor said, “I think at this point, we can consider that.”
“And then we can discuss Lexapro, if that’s what you think will help,” My mom said.
My doctor ordered some tests. I sat there feeling utterly defeated, mentally and physically.
As I left the appointment, my doctor said, again, “This isn’t goodbye, Emma. I will check in on you.”
I got into my car and called my mom. “I don’t think this is depression, Emma,” she said. “I think the doctor is wrong. I think there is something physically wrong with you. We are going to figure this out.”
My mother has a nursing degree from the South Puget Sound Community College in Olympia. She graduated in 2009. After my older brother died in 2002 due to leukemia complications, she decided she wanted to be a nurse after seeing how amazing they were at Children’s Hospital in Seattle. My mother is incredibly smart, creative and the first person I always go to for medical advice.
We both agreed that the doctors here were not helping me. And frankly, she said, they didn’t believe me. I had ten blood tests done. A week later, I reported back to the nurse practitioner who prescribed me multiple psychiatric medications. My PCP prescribed me Lexapro.
I stared at the three different pill bottles laid out on my bed when I got home. They overwhelmed me and every instinct I had was saying, “No.” I tucked them into my backpack, got into bed and spent the next three weeks only focused on rest.
In late May, I packed up my room and started the drive from Missoula back to Portland. After resting for three weeks, I finally felt somewhat stable. I was going home, even if the drive took a week. I couldn’t spend another month in bed.
Somehow, I managed the drive in one day. It was terrifying. My fatigue forced me to pull over a few times. As I crossed the border into Umatilla, Oregon, my mother called me.
“I’m in Umatilla.”
“WAHOO! You’ll be home tonight,” she yelled.
The second day I was home, the blood test results eventually came back. I tested negative for everything except for cytomegalovirus (CMV), a virus in the herpes family. People are commonly infected and are usually asymptomatic.
CMV explained some symptoms but not all of them. I spent the next three weeks going from the bed to the couch downstairs in our living room, to sitting outside in the sun and back to my bed before going to sleep. My symptoms only got worse. I started the Lexapro but had no improvement.
The seventh doctor
On June 16, I saw my mom’s doctor with the Vancouver Clinic in Tualatin. My mom had already told her I was sick and that no one could figure out why.
“Are you depressed?” the seventh doctor I’d seen since September 2021 asked me.
“I’m depressed because I can’t do anything I love.”
I told her I was severely fatigued, tingly and had brain fog.
“Well, I’m not a fan of telling people they’re depressed when there is something else wrong,” she said.
She opened my MyChart and wrote down all the tests that had been done already. She explained running the same tests over and over clearly wasn’t revealing anything.
Doctor seven did three tests — CMV, a different vitamin level and an intrinsic antibody level for an autoimmune disease called pernicious anemia, which is the inability of your body to absorb vitamin B12. Another painful week went by. When I hadn’t heard anything, I called the office. “Oh, you,” the nurse said when I told her my name. “You’re the one with the severely low vitamin B12 levels.”
I was standing in front of the fireplace. My parents were sitting at the kitchen table just across the room from me. “B12” I whispered to them. They both whipped out their phones and began googling immediately.
“She wants you to get four shots every week starting as soon as possible,” the nurse said.
I scheduled the shots and hung up. An overwhelming amount of rage filled my body, unlike anything I’d ever felt before.
I was right. I wasn’t crazy. I was sick, my body was compromised.
A part of me was relieved that finally a test had come back indicating that something was wrong. But it didn’t change the fact that I had doubted my instincts, my own body. For nearly ten months, I had felt crazy. I’d told myself it was all in my head despite every part of me screaming that I was sick. I had uprooted my entire life, left my job and the state I called home, because the doctors had refused to believe me when I said I was sick. Instead, they had dismissed me, ignored me and made me question my own sanity.
I vowed to never, ever again doubt my instincts.
“It’s called the walking-zombie syndrome,” my mom said from the kitchen table. “Every single symptom listed, you have.”
Deficiencies are common among vegetarians or vegans, but I eat meat. I tested negative for pernicious anemia. It left my mother and me wildly confused. My B12 level was 168. Anything below 200–300 is considered deficient.
My doctor said that after a few shots, I would begin to feel better. Sometimes, it can take a full year to recover from a B12 deficiency, though.
I started my shots on June 21, 2022. As I sat in the chair, waiting for the nurse to insert 1,000 micrograms of B12 directly into my bloodstream, I began to wonder: how did my B12 levels get so low? Were my low levels connected to my energy crashes back in Sept. and Oct. of 2021? The puzzle pieces didn’t fit.
Just a few days after my first B12 shot, I was invited to a pool party by a high school friend. I had hardly socialized with anyone since mid-March, and I felt going would be good for me. So, I went. There were five people. We hung out inside my friend’s apartment for an hour or so before laying by the pool for the remainder of the day. I was exhausted but felt like myself again.
The next day, I got a text from my high school friend that their partner had tested positive for Covid. I was fully vaccinated. I’d been exposed to Covid three to four times in Missoula the previous year and never got it.
June 27, I woke up feeling off. It had only been four days since the party. I isolated and waited another day. On June 28, day five since exposure, I took another Covid test. I’d lost count of how many tests I’d taken at this point. However, this would be my second positive Covid test.
Covid round two
Covid hit me like a truck. I was out for a full week, nose like a faucet, barely able to function. My dad asked me if I wanted Paxlovid, I declined. I figured I’d be fine. I was fully vaccinated. I was young. There was no sign of concern from doctor seven.
On July 5, I tested negative. I returned to the clinic for my second B12 shot. July 13, I returned to Missoula. I spent a few days packing up my room. I quit my job; it was time for me to move on. I knew once I felt better, I was going to want to travel or perhaps work as a climbing guide for SheMovesMountains.
I came home for my fourth shot on July 21. My B12 levels were retested and came back in the 700s. Doctor seven retested me for CMV, my levels were above 10.00, indicating I was still positive.
In Aug., I realized I didn’t feel any better. In fact, I felt different. Every day, I felt as if I was wearing a lead exoskeleton. Everything hurt and ached and only got worse with any kind of small exertion. By the end of the month, I was experiencing double vision, constant floaters, ghost images and flashing lights in my vision. My hands and feet were routinely numb, buzzing, tingling.
I began having migraines weekly. Any time I was standing up right, it felt brutal and exhausting. And the harder I tried, the less and less cognitive I became.
On Aug. 11, I went back to my PCP at Vancouver Clinic to express concern. Doctor seven was confused and concerned; she recommended seeing an eye doctor. Then, she ordered an MRI and sent a referral to a neurologist.
The eighth doctor
My appointment with the eye doctor was on Aug. 29. I told the doctor in Lake Oswego my symptoms. My vision tests came back completely normal. He said because I was having an MRI done, he wasn’t concerned. As I was leaving, he pointed out my symptoms were most likely caused by stress because I’m a young woman and being a young woman is stressful.
I would hear this again and again over the course of the year. The anger I’d felt in June of 2022 would bubble up to a point where tears involuntarily formed around the edges of my eyes. I would leave the room in fear that I would scream at the doctor and then they would refer to me as “hysterical.”
Doctors and medical professionals often have no idea about the reality of what they’re saying and how insensitive or hurtful it can be. If you wouldn’t say it to a male patient, don’t say it to a female patient.
On Sept. 7, I sat in an upper booth of Tea Chai Té in Sellwood, a neighborhood of Portland, Oregon. Under the table, I felt something weird in my leg. I looked down to see a muscle I didn’t even know I had in my left thigh twitching profusely.
Uncontrollable panic coursed through my body. I drove home and rested. On Sept.12, I had an MRI done. It came back completely clear except for a small incidental cyst; however, it caused no panic from any of the doctors.
The ninth doctor
Sept. 22, I had my first appointment with a neurologist at Providence Neurological Specialties. My mom accompanied me. I explained my debilitating fatigue, migraines and visual symptoms. In the after-visit summary, doctor nine said, “Most of your symptoms are likely related to your vitamin B12 deficiency. Your vision symptoms are consistent with ocular migraines.”
I’d had migraines my entire life, I’d experienced vision tunnels before having migraines. These symptoms didn’t feel concurrent with ocular migraines. I researched drawings of ocular migraines by people who had them, the drawings didn’t appear to be what I was experiencing nearly every day, all hours of the day. I called my friend in Missoula after the appointment. She’d dealt with debilitating migraines for a few years.
“Those don’t seem like ocular migraines,” she explained. “This sounds like a wastebucket diagnosis because he doesn’t know what’s going on but doesn’t want to say that.”
This same friend had low B12 as well, and went to the same clinic as me in Missoula where they also missed her low B12. After hearing my story, she demanded they test her levels. And after one shot, she was able to ski again. When it was October and I still felt plagued by my symptoms, I began to wonder if there was something else wrong with my body.
On Oct. 11, I had a colonoscopy. My PCP, doctor seven, wondered if they would find an answer as to what caused my low B12 by further investigating my entire colon. Nothing was found, but after this appointment, my fatigue sent me to my bed for a near month.
When I got up to walk, the floor moved like rubber under my feet. I was constantly overcome by vertigo. I couldn’t focus on anything. I began experiencing tremors in my hands. My muscles twitched and jerked constantly. Sometimes as I laid in bed, my entire torso would jerk as if I’d been shocked with electricity. My heart began to race and routinely skip beats. I felt wired and tired constantly.
The Naturopath
On Oct. 14, I saw a naturopath at the Portland Clinic of Natural Health. She ordered a full vitamin panel. A few weeks later, it came back. Many of my vitamin levels were low except my ferritin, which was abnormally high. She thought this was causing my heart palpitations. The doctor said the overall low vitamin levels were why I felt depleted and constantly fatigued. Two visits later, she recommended I push myself to climb or walk to get rid of the anxious thoughts. Surely, I would feel better.
My days revolved around lying in bed or when I could, getting up and walking around the block. I had to pause frequently. Every time, the road would blur and swirl in front of me. I’d get dizzy and confused. I always had to lay down for at least an hour once I arrived home.
Another Psychiatrist
Part of me thought being on psychiatric medication would help. However none of my providers sent me a referral to one despite me asking. I found a psychiatric nurse through Better Health on Oct. 17. She prescribed me BusPar, an anti-anxiety medication. I was on it for a full week before I began experiencing worsening spiraling thoughts. Then, I tried Prozac. I experienced excruciating GI symptoms.
My heart palpitations were happening six to seven times a day. On Oct. 20, I went back to my PCP, and she ordered a heart monitor. I wore it for a week, and they found palpitations and extra beats but nothing overly concerning.
Back to the Neurologist
I went back to doctor nine, the same neurologist as requested by my PCP for a follow up about my heart monitor on Oct. 25. He ordered me to lay down, sit up and stand up as he tracked my heart rate. He said, “You barely meet the criteria to be diagnosed with postural tachycardia syndrome or PoTs.” He told me to cut out any caffeine from my diet.
“Are you sure I have this?”
“Pretty sure,” he said.
“What’s the standard test to diagnose me?” I asked. “I’ve been drinking coffee since I was 12. I don’t want to change my diet around something that you’re only pretty sure I have.”
“It would be a tilt table test at OHSU.”
“Can I get that, please?” I asked him.
“It’s not necessary,” He responded.
I then asked him again about my visual symptoms — which were happening at all hours of the day, continuous twitching, muscle jerks, weakness, numbness and tingling. I asked him for an MRI of my spine, more testing to rule out anything fatal. Multiple Sclerosis (MS) and other neurological disorders also have these symptoms.
He said in a dead tone, “Emma, your fatigue, and muscle symptoms is most likely tied to your migraines, which is because of your anxiety and depression. This is also why you’re approaching hypertension.”
He recommended anxiety medication for my muscle twitching. Then, he prescribed amitriptyline for my supposed ocular migraines and said we should continue the “conservative method” for my PoTs, which meant to drink lots of fluids and wear compression socks. He discussed salt tablets but worried it would raise my blood pressure. If my symptoms didn’t improve, we would discuss medication. He recommended I reschedule in six months and left the room.
Doctor nine’s diagnosis of my anxiety and depression being the cause of my migraines, muscle twitching, weakness, numbness and debilitating fatigue made zero logical sense to me. The lines and symptoms connected like a skeptical, poorly designed, nonsustainable, flawed spider web.
My head felt like it was about to explode. I sat on the exam table, barely able to hold myself up because I felt so utterly physically depleted from driving the near 40 minutes to this appointment.
Was I crazy? Was my fatigue really this bad? Was it all in my head? Am I just a hypochondriac? But I had never ever felt like this before. It didn’t make sense. I just wanted answers that weren’t linked to my mental health.
I dragged my body back to my car, turned on Metallica and began sobbing with my head against the wheel. Then, I opened MyChart and messaged doctor seven asking for a new neurologist.
For four months, I stopped drinking caffeine, increased my fluid intake and wore compression socks. It did nothing. My family could clearly see by now how hopeless and depressed I felt. I could barely do basic tasks.
The trauma-based nurse
In Nov., my mother found a former nurse who now focused on helping patients navigate the healthcare system. We met for tea and about twenty minutes in, I realized she was weirdly focused on what my family has been through and not my symptoms. I was in therapy and a support group once a week. She told me my symptoms were because my body was overwhelmed by the amount of trauma I’d experienced. I needed to see a local witch and get the trauma out of my cells. Then, I may feel better. She said, no matter how many doctors I see, it won’t matter; I’ll get the same answer. She was partially right about this.
I was beyond fed up with everything. My mind was living in a constant swirl of confusion. I just wanted to feel better. No one could visually see how awful my body felt, and no one was going to bother to try and understand. At every single doctor’s appointment that I dragged my aching body to, every doctor somehow linked all my symptoms back to depression and anxiety, despite me insisting I was depressed and anxious because I felt so sick. Or they simply didn’t know how to help me. Many of the doctors told me to work out; they insisted it would help me better, even when I reiterated that exertion made me feel worse. Then they would throw whatever psychiatric medication they could at me, which only made me feel worse.
I told doctor nine and the naturopath that I was a sub six-mile runner in high school. I went to Steens Mountain High Altitude Running Camp two years in a row in high school. I lived in Montana for six years where I climbed six days a week. I’d skied Trapper Peak, the highest peak in the Bitterroot Mountains. I used to be able to drive eight plus hours on my own. My question wasn’t, “How do I push my body past its limits” it was, “Why can I no longer push my body the way I used to?” “What is happening to me?” Now, when I walked around the block for more than five minutes, it felt as if my entire body was slowly shutting down until I rested.
Both of them looked at me skeptical and almost laughed. They didn’t believe me.
Each doctor had the power, authority, education and training to help me find a solution. None of them did despite me repeatedly saying, “Something is wrong with my body. You have the power to help me find an answer.”
For four months, I fought suicidal ideation every day. For two months, I hated being awake and began planning how I would end my life. I felt completely defeated and hopeless. Living in my body plagued by these symptoms was too hard.
In Feb. 2023, I ended up at a mental health crisis center. The medical gaslighting was destroying me.
A few weeks later, I sat in the kitchen with my legs hung over a chair. I opened an article by the Washington Post discussing Long Covid and chronic fatigue syndrome, or Myalgic Encephalomyelitis (CFS/ME). I read about the symptoms, the common experiences patients go through with the health care system. It sounded terrifyingly similar to my own.
I thought back to Sept. of 2022. I was on a walk with my mom and had to stop to put my hands on my knees to catch my breath. While I was kneeled, she said,
“I think you have Long Covid, Emma.”
I believed I did from my first infection but not from my second one. I was vaccinated. I was young. How would I have gotten worse after getting it again despite being vaccinated? News outlets, doctors — no one talked about what getting Covid again could do to you, and no one talks about all the symptoms besides the fatigue, and doctors surely aren’t aware of everything it encompasses.
“Mom,” I said. She was chopping vegetables, “I think I have Long Covid.”
“Yeah, I know.” She said, “It’s going to get better.” She smiled at me.
Over the course of the next few weeks, I researched every possible symptom of Long Covid. I had to dive deep into the internet archives, read newer medical studies to learn that all my symptoms were reported by patients with Long Covid. I began to realize that Long Covid is too new for medicine and the health care system. It’s also almost entirely an invisible illness. All providers see is a patient who appears down, depressed, complaining of debilitating symptoms. There are over 200 symptoms associated with this disease, and most health care providers aren’t educated on them. Symptoms range from all different organs and systems of the body — fatigue, neurological symptoms, gut dysfunction, muscular skeletal issues, sleep disturbance, anxiety, depression and so many other symptoms.
We are only now just discovering the blood tests that reveal Long Covid, but many providers are still unaware, and some have politicized Covid itself. Doctors have also been taught that CFS/ME, which has symptoms that nearly mirror Long Covid, is not real. In a newsletter from Health Rising, it states, “(Medical Doctor Wes) Ely has gone from a skeptic not just with long COVID but with ME/CFS, long Lyme and fibromyalgia. He readily admits he believed what he was taught in medical school — that these diseases are not real. (He reported some recent medical students are still being taught that long COVID is not real.)”
In theory, if we are going to continue to live with Covid mutating and infecting people, providers should be required to undergo education on what Covid can do to their system of the body so when patients come forward, they know exactly what to look for. However this isn’t the case. This leads to gaslighting, a prescription for an antidepressant and a wave goodbye.
Unraveling the spider web
I made a timeline, starting from the day I received my first positive Covid test on Nov. 3, 2020. I thought about how I’d felt since then and then mapped out the following two years. I hadn’t ever felt the same since getting Covid; my energy levels had significantly dropped. Every month or so, I would feel like I had the flu. My crashes got worse after graduating as I was required to be on my feet more. Post Exertional Malaise (PEM) is the term I use now. I had managed to keep going until my B12 levels dropped, which many people with Chronic Fatigue Syndrome, or myalgic encephalomyelitis (CFS/ME), also experience. Then I got Covid again and it got even worse.
I learned that Long Covid is a mixture of so many things. Some patients with Long Covid test positive for dormant viruses such as Epstein-Barr, Mono, CMV, etc. Some are known to have abnormal cortisol levels, T and B cells, four proteins (Ba, iC3b, C5a, and TCC), Ferritin and other vitamin levels. Some still have virtual persistence, meaning the virus is still in their body. For some, Covid triggered an immune response. And sometimes Covid causes mitochondrial damage, meaning our energy creating process is severely impaired within our individual cells. In addition, Covid can lead to blood clots which in some cases can cause heart attacks and strokes. However, there is still so much we don’t know. And it affects everyone completely differently. Not everyone has debilitating fatigue.
My first Long Covid Support Group
I joined a Long Covid support group in March. Each member has two things in common — Long Covid and the desperate, painful desire to get their life back. The first zoom session, I was overwhelmed by the number of people also living day to day life plagued by my symptoms. Like me, they could not work, had experienced medical gaslighting and felt misunderstood and isolated by this disease. To say they were shocked when they learned I’d waited a painful three years for my diagnosis is an understatement. They shook their heads, and some held back tears when I told them I was only 24. To my relief, they shared my neurological and muscular symptoms which had confused doctor nine. I signed out of the meeting feeling validated and realizing again that I was not crazy or hysterical and it was definitely not all depression- or anxiety-related.
I was never validated by my previous doctors. Instead it was confirmed by a fellow cohort of fellow Long Covid or Long haulers that yes, I have a debilitating, chronic condition called Long Covid. I am sick and have been since Nov. 2020.
The following weeks, I wondered why my diagnosis of Long Covid had taken so long and why no medical providers had bothered to ask me about when my symptoms started. And how did no one in Montana suspect Long Covid?
Living in Montana with Long Covid, where the politicians are overwhelmingly conservative, can make a dangerous cocktail for questionable, biased and sometimes atrocious health care.
The tenth doctor
March 12, 2023, my mother, and I drove to Vancouver Clinic in Vancouver, Washington to meet my new neurologist. We told him what we discovered, and he agreed, that long Covid is what I had.
“What can you give her? She’s 24.” My mom said.
I already knew this answer: there is no cure and no FDA-approved treatment options for Long Covid. All medications are off label, and insurance also doesn’t cover them. Some doctors refuse to prescribe them saying, “We’ll continue “the conservative method.”
The conservative method indicates giving a patient no medication and instead recommending pacing. With Long Covid and CFS/ME, pacing involves doing day to day activities when you feel your symptoms are manageable but when you don’t feel good, resting and focusing on recovering versus just pushing through. Every morning, I open Visible, an iphone app which tracks my heart rate and tells me on a sliding scale from one to five if I need to pace or not that day.
I’ve spent a year learning how to pace. While it does help, it’s frustrating and goes against human nature. When a doctor who often doesn’t have my condition refuses to prescribe off brand medication that science is showing could aid my debilitating symptoms and instead instructs that I should try pacing, it feels very insensitive and unempathic. They rarely understand how hard it is to actually pace and live with my disease.
The health care system, insurance companies and the world reiterate the message that if you cannot contribute to society, you are alone and voiceless. And people in power have given up on Covid, allowing it to continue to mutate and spread, causing 10% of people infected to develop Long Covid and go through this spider web of mind fuckery.
“She needs to rest and pace,” the neurologist said.
Today, late January 2024
After six months and one lost referral, I was accepted to the Oregon Health Science University (OHSU) Long Covid Clinic in Aug. 2023. I am working with a team of four doctors, three of whom I was told I didn’t need all of last year. The sad reality is many Long covid and CFS/ME clinics are overwhelmed due to the pandemic. This means many patients who desperately need help aren’t always able to get in or are dismissed. Often waitlists and wait times are long too and insurance doesn’t cover the treatment. I am very lucky.
Since Oct. 2023, I’ve been adjusting to low dose Naltrexone (LDN), which I had to push and push my OHSU Long Covid provider for. It’s shown promise in relieving fatigue and brain fog. I have a new PCP (doctor 11), a neuro rehabilitation doctor (doctor 12) and a physical therapist.
This fall, I had my initial appointment with doctor 11. I requested she wear a mask and called the clinic prior to the visit to explain that I had Long Covid and it would make me feel more comfortable if she wore one. Masks are no longer required in health care settings.
On the day of the appointment, I sat in the waiting room, sitting far away from those who don’t mask as they coughed or sneezed, it’s allergy season. Only empty chairs and tabloid magazines are within six feet of me. My body is constantly on high alert now after my experience and I have to remind myself to breathe. Maskless patients stare and some of them comment under their breath when they see me in an N95. I’ve learned to ignore it. If they heard my story, I hope they would understand. When my name was called, I followed the assistant into my room and waited for doctor 11.
Doctor 11 poked her head into the room to ask if I wanted her to wear a mask. When I said, “Yes, please,” she quickly put a mask on and entered the room.
“So, I hear you think you have Long Covid,” she said to me.
“Yes, I do.” I said through my N95.
She went over my chart on the computer and began confirming the dates of my Covid infections. Soon, she was asking me about my day-to-day life, symptoms and how my life was before I got sick. As I began speaking, she stopped typing. Her face turned to me, her eyes and corners of her face had changed. She looked gutted, concerned and disgusted.
“I cannot imagine the grief you must be feeling,” she said, “This sounds awful.”
I felt my throat tighten and tears forming at the edges of my eyes. I’d become so used to being in a constant state of suffering and my body feeling like a faulty battery that I’d forgotten how severely horrible this had all been. I hadn’t allowed myself to feel the after effects of the trauma from Covid, the gaslighting, losing everything; climbing, physical activity, my career, my passions, friends, my whole foundation because I’d been living in survival mode since that first crash in Sept. of 2021.
After filling out a mood questionnaire, she asked if I was open to psychiatric medication. She insisted she knew and believed me when I said my illness was physical. But the numbers showed severe depression and anxiety. She reiterated that she wanted to do everything she could to help me and raising my mood just a pinch was important. I agreed, it wasn’t fair to make myself be living in such a state of grief. But the time clock was ticking. She asked me to schedule another appointment where she would hear my history with psychiatric medications before she threw the fourth one at me.
“If you feel bad on it, stop taking it, you know your body,” she said. I nodded. She trusted me. I stood at the check out desk holding back tears as I scheduled my follow up. For the first time, I was actually looking forward to seeing a doctor again. And I realized,
I have never, ever given myself credit for what I’ve been fighting through. I’ve been to hell and back.
A few weeks later, my mother met doctor 11 and during the appointment the doctor said,
“Your daughter is really smart, level headed, open minded and logical. I believe she is going to get better.”
It was the first time since 2020 that I’d had a doctor acknowledge and validate the severity of the emotional pain I was feeling as a direct result of the physical suffering I’d been enduring for over three years. It was also one of the first times I’d had a doctor not question my intelligence or attempt to undermine my experience. It gave me the validation I needed to try and attempt to start the healing process.
Now, I am healing and learning to trust my instincts again.
It took ten doctors, one trauma-based nurse, two states, one move, quitting my job, two covid infections, three different psychiatric medications, one day at a mental health crisis center, and three years for me to receive my diagnosis of Long Covid. I’m 25. I’m considered disabled. I’m unemployed. I live at home. I deserve better. Everyone living with a chronic illness deserves better. There are little to no resources for those of us suffering. This is a profoundly unfair and messed up situation due to a broken system.
Resources for Long Covid or CFS/ME Patients
Long Covid Clinics by state: https://resphealth.org/wp-content/uploads/2022/12/Long-COVID-Clinics-Final-1.pdf
Information about LDN: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313851/
