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August 21, 2022
I share my story to raise awareness for Long COVID, to provide education about signs & symptoms, & to provide resources and support to those affected. Patient led advocacy has been critical in developing ways to diagnose and treat this condition. The following interview encompasses much of my experience with this illness, as a previously healthy & very active person in my thirties. I've improved a lot since first getting diagnosed and continue to make progress, slowly. There are also impacts from my illness that I don't share publicly, & am privately working through with the help of my support system and healthcare team.
This interview was completed for the article published on 8/11/22 "COVID changed their lives. What those with long-haul symptoms want people to know" by Danielle Dawson
When were you first diagnosed with COVID? What was that experience like?
I was exposed on March 9th, 2020 after my partner returned home from international travel- which makes me one of the longest haulers. By March 12th we both had symptoms, and although it was unlikely since there were less than 1,000 cases in the U.S. at the time, I strongly suspected it was COVID. My partner was tested in the local ER, and we both quarantined until results came back on March 16th and we were told he was positive for COVID. I was “presumed positive” (tests were in short supply and rationed back then) and this was later confirmed in an antibodies research study we participated in soon after.
The timing of getting COVID was extremely difficult since we had to quarantine before the March 19th shelter in place orders and had no chance to prepare. There was the toilet paper shortage, grocery stores were being depleted, people were panicking, and we were totally dependent on our support system for food and supplies. It was a chaotic and surreal time. My symptoms during my acute infection were mild- no fever, no cough; just heavy fatigue, body aches, brain fog, and some GI symptoms. I’m a licensed psychotherapist and I continued to work virtually during my illness. It was somewhat surreal processing clients’ fears around COVID while I myself had the virus, unbeknownst to them. Between caring for my partner who had much more severe symptoms and working, I hardly gave my own health a second thought.
About a week following my initial symptoms I felt recovered, although due to the shelter in place order I wasn’t able to resume my usual activities like hiking Torrey Pines or attending a yoga class. Once I was able to be active again, things felt a bit more challenging but I assumed I was out of shape from the weeks of quarantine. I pushed myself harder to get my strength back, which I now know was the wrong thing to do. At the time we didn’t know long COVID was possible, or anything about how it manifested. If I’d known what I do now, I would have rested and paced myself until my body could better tolerate those activities.
My understanding is that there are two paths long COVID can take: First, those who are symptomatic with a COVID infection and experience persistent symptoms even after the infection has cleared. The second is those who are asymptomatic or have mild to moderate symptoms, appear to make a full recovery, and go on to experience a gradual decline in health in the weeks and months following the infection (as was the case for me).
Over the next 6 months following my infection I noticed that my usual activities seemed increasingly more challenging and exhausting. That’s the best way I can describe long COVID- everything feels hard. Taking a shower left me dizzy and so fatigued I had to lay down afterwards. Walking my dog on our usual route caused my heart rate to skyrocket and left me breathless. I had trouble remembering things, like why I walked into a room. In conversations I would struggle to find a specific word even though I knew it was in my brain somewhere. Driving became quite challenging- what used to be automatic and easy now required a lot of concentration, and I felt highly anxious on the road. My nervous system was dysregulated by even minor stressors and took a long time to come back to baseline. I simply didn’t feel like myself in my own life anymore.
When after you recovered from COVID did you realize that something was wrong?
The key moment was a few months after my infection while attempting a hike with friends. Prior to getting COVID the difficulty of this hike would have been mild to moderate- nothing I couldn’t handle. However, my heart rate was close to 190 even when taking it slow, and I was so dizzy and fatigued I thought I might pass out. I could only do a minute of uphill before I had to rest for a few minutes to get my heart rate down and catch my breath. Downhill was much easier but I was still exhausted. Hiking had been a regular part of my life, so I knew something was really wrong. By that point we were starting to hear about the phenomenon of “long COVID”, but since my infection was so mild and there was a period of time afterwards that I felt ok, I still didn’t make the connection.
I experienced the same thing when attempting my usual Torrey Pines hike, to the point that I couldn't even make it halfway up. Other symptoms I started to experience included severe insomnia, shortness of breath, chest pain and palpitations, tinnitus, hives and other allergic responses, new food intolerances, occasional fainting episodes, exercise intolerance, and something that I later learned was called “post exertional malaise”, or PEM. It’s the worsening of symptoms following physical exertion, mental exertion, or emotional stress. For me, PEM feels like I have COVID all over again, but much worse. I can hardly move from fatigue, my whole body hurts, and my brain is so foggy I can’t find words to express how I’m feeling or what I need.
How long did you experience residual symptoms before you were diagnosed with long COVID? What was that experience like? How did it feel getting the diagnosis?
It took about a year to get the diagnosis of Post-Acute Sequelae of COVID-19 (PASC), but at that point I had already self-diagnosed and pushed for the testing to confirm it. I had read a news article about long COVID that mentioned a condition called “POTS”- Postural Orthostatic Tachycardia Syndrome. Once I learned more about this condition I knew that I had it. Testing through cardiology and neurology confirmed the diagnosis. POTS is a dysfunction of the autonomic nervous system that causes low blood pressure, rapid heart rate, dizziness, fatigue, weakness, and exercise intolerance. It’s extremely common in long COVID patients. At my first cardiology appointment my blood pressure was 84/54 with a resting heart rate of 135, so my vitals provided some clues. My cardiologist then referred me to the Scripps COVID Recovery Program for treatment.
Part of me felt relieved after getting the general diagnosis of PASC just to have an answer, but part of me was and is concerned because it’s still a novel condition that’s not well understood. There is a constellation of other diagnoses that accompany PASC, some of which are straightforward and others which are more baffling- such as the shortness of breath many patients experience even without lung damage. We don’t have decades of research to understand the condition and develop treatments. In the absence of a clear path to recovery, there’s a particular need for collaboration between patients and providers that’s perhaps less typical in healthcare. Doctors are learning along with us, and are also learning how differently this condition can present for each patient.
How did it impact your mental health? Did it have any impact on your social life or career?
The mental health impact has been significant, and two-fold. First, the loss of prior physical and cognitive functioning is difficult to cope with. There is a huge sense of grief and a major loss of identity. On top of having more to cope with and decreased stress tolerance, I haven’t been able to use many of my previous coping strategies such as hiking or going for a run. I’m fortunate to have had a strong support system to lean on throughout all of this. They have been amazing in terms of educating themselves about my condition, adapting our usual activities to my tolerance, and allowing me to process my feelings about it all.
Second is the constant threat of COVID reinfection and lack of a sense of safety. Many long haulers develop PTSD and live in a state of hyper-vigilance. We don’t have the luxury of forgetting about the risk of COVID when we live daily with the consequences of what it can do. Everyday decisions require a risk assessment to determine if people and places are safe. I haven’t eaten inside a restaurant or attended an indoor event in years. I prefer to do my grocery shopping as soon as stores open or right before they close to avoid other unmasked customers. Because I have to consider safety before doing anything that involves other people, my life looks very different socially than it did before COVID.
People will say “you can’t let COVID keep you from living your life” because they don’t realize that’s exactly what long COVID takes from you- the ability to just live your life however you choose. I’ve met other long haulers who say with regret, “I didn’t take it seriously- I didn’t think anything like this could happen to me.”
It’s also very isolating to have an invisible illness where you might be out and about doing somewhat normal things on a “good day”, so you appear to be fine to others. However, what the world doesn’t see are the bad days when we can’t leave home or even get out of bed. Sometimes doing too much on those “good days” leads to a flare that lasts days to weeks.
In addition to personal therapy, I have been attending a virtual long COVID support group that’s helped me tremendously. I also co-facilitate a long haulers support group at Scripps La Jolla, which is open to anyone (though we do have a screening process). I’ll be offering additional virtual long hauler support groups in the near future.
In terms of career impact, I’ve had to reduce my caseload as well as take considerable time off. It has not been ideal in my line of work to be inconsistently available to clients, but I’ve been transparent with them and try to give them as much advance notice as possible for periods of time off. Therapists typically share very little about our personal lives with clients to keep the focus on them vs ourselves, but I’ve actually found that it’s deepened my connections with them to acknowledge our shared humanity. My clients are some of the best people I’ve ever known, and their genuine support of me and my recovery needs has meant the world to me. My work gives me a lot of meaning and purpose, so it’s a major source of motivation to make a full recovery.
What kind of impact has long COVID had on your finances?
Health insurance only gets you so far when you have a complicated and poorly understood illness. I am really privileged to be able to pay out of pocket for various providers and treatments, which has certainly been a drain on finances but still manageable. Over the course of the last 2.5 years I’ve taken off a total of about 6 months, on and off. So there’s loss of income as well, but I’m self-employed and again, privileged to be able to take off so much time for my recovery while still being able to maintain my practice.
I have tremendous concern for those who don’t have access to good healthcare and are not able to take extended time away from work. Those who were already at a disadvantage are affected the most profoundly, and that is something we really need to remedy. This is a mass disability event unfolding, and we aren’t equipped for it. Many people will not even get a proper diagnosis of PASC, or won’t be diagnosed for months or even years.
What has your treatment been like since being diagnosed with long COVID?
My treatments have included cardiac rehabilitation, heart medication, occupational therapy, physical therapy, speech therapy, acupuncture & traditional Chinese medicine, breath work and heart rate variability training, naturopathic medicine, a low histamine diet, drinking massive amounts of salt water to boost my blood pressure, a variety of different supplements, and other trial and error treatments.
I’m currently a patient in the Scripps Brain Injury Recovery Program 3 full days per week for the brain fog and nervous system impacts. Prior to getting COVID, I rarely saw a doctor more than once a year, so it’s been a lot.
Pacing and intentional rest breaks throughout the day are also a key component of my treatment. I've also discovered that my symptoms improve when I'm immersed in nature, where there's considerably less stress on my nervous system, so I regularly take time off to visit the redwood forests of northern California. It might appear to others as a vacation, but I consider it to be medicinal.
Do you have any anecdotes about times during your recovery post-COVID or during COVID that were notable for you?
You hear the phrase “listen to your body” all the time, but I didn’t truly understand the meaning of that until my illness. I used to be able to push through a long day of work even when tired, or rally for a social event. Fatigued is different from tired… you can’t rally or push through fatigue with some coffee- it’s a forced stop. I now use a health journal daily to track my energy and symptoms, and I’ve had to become attentive to the subtle cues my body gives before I reach the point of forced stop or trigger a flare.
In the mental health world, we often say that healing isn’t linear. This couldn’t be more true of long COVID. There are good days then bad days; good weeks then flares that take weeks to dig out of. The best advice I could give to other long haulers is to view your body not as failing you, but as needing you more than ever to listen to and care for it. Your body might feel very different, function differently, and look different… it’s been through a lot and is doing the best it can.
I also recommend finding a support group and/or a therapist who specializes in chronic illness. The feelings of grief, loss, anxiety and uncertainty are normal. Processing them in a supportive space is tremendously helpful and reduces feelings of isolation. I will be offering a virtual long hauler support group in the near future, and anyone who is interested is welcome to contact me.
If someone were to walk away after reading this article, what is the one thing that you hope to convey or want someone to remember?
Research indicates that each infection increases one's likelihood of developing long COVID, disability, and other negative health outcomes.* If someone previously had COVID and fully recovered, that doesn’t mean they’re not susceptible to long COVID with their next infection.
Simple actions such as masking indoors, testing yourself after symptoms and exposures, and staying home if you have any symptoms at all are ways to protect yourself and those close to you. These measures are also ways of supporting long haulers, those with chronic illnesses and disabilities, those unable to be vaccinated, and healthcare workers who continue to be inundated with cases of acute COVID and long COVID. If people knew what long COVID felt like, they would not find it difficult to wear a mask. Taking precautions isn’t political; it’s community care and it’s creating a safer world for everyone to live in.
Copyright © 2019 Kristy Malone, LMFT, NTP - All Rights Reserved.