I debated whether or not to share this part of my COVID-19 experience as it is profoundly personal and is something that I would typically not make public to protect my own privacy.
Since sharing my first post, I’ve received a lot of messages from people who are also going through similar COVID-19 experiences, or they have family members who are sick with the virus. Many people expressed how scared they were but that they felt relief after reading my first-hand experience despite the realization that COVID-19 is much worse than they initially thought.
There is truth to the cliché that “knowledge is power,” and no matter how bad a situation can be, the unknown can often lead to catastrophizing thoughts that can ruminate in your mind until the anxiety becomes unbearable. This is one of the reasons I have decided to share about my experience on this very private subject.
Every person’s experience with the virus is different–but there are some things that we know to be common among those of us who have experienced COVID-19.
Critical cases require ventilators, and all other cases are considered mild, but don’t let that fool you. COVID-19 will still fuck up your body in ways you cannot imagine.
My doctors at Stanford have been great in disseminating information about the virus and what to expect. Based on their research and the sheer number of suspected cases they have treated, they’ve been a great resource in helping me understand that my experience, although unique, is not isolated.
1. Many COVID-19 patients have an up and down rollercoaster of symptoms, and even after testing confirms that they are no longer have the virus, many patients still experience the same symptoms. Extreme fatigue, coughing, continued GI issues, loss of smell, and/or horrible breathing issues. These persistent symptoms are what make it incredibly challenging to know when someone is COVID-19 free–which is essential for healthcare teams as they determine how to treat the symptoms. Knowing you are truly negative for COVID-19 also provides patients with peace of mind that they are virus-free.
2. Which leads me to the next collective experience: COVID-19 patients experience physical anxiety and dread that can increase the risk of cardiac issues. This is why doctors emphasize that it is imperative to eliminate other stress triggers on the road to recovery. And there is still much debate about how long that road will actually end up being.
Based on what I’ve read and in my understanding of the brain-gut connection, I’m not surprised. It is medically established that COVID-19 can attack the GI tract. I’m sure in the process of the immune system fighting off the virus in the GI tract, the serotonin levels–the fight or flight chemical–are affected. When Serotonin levels in the GI tract are altered, this triggers anxiety and depression in the brain.
When my abdomen pain was at its worst, I could clearly identify feelings of terror–almost like death was looming, and the rise of anxiety that surpasses anything I have experienced in my life to date. Although I knew in my brain that this was not logically true, my physical body sure as hell didn’t get the memo. In a recent New York Times opinion piece*, Fiona Lowenstein shared similar accounts by other COVID19 patients who are in the recovery stage. Like myself, Lowenstein was compelled to share her story because she too has had lots of questions flood her email box and direct messages, including
“Are you better yet?”
The answer is no.
3. Which leads me to the third common trait COVID19 patients experience: the virus destroys your immune system and fucks up everything on its way out the door.
Last week, I was back at Stanford with horrific abdominal pain and continued fevers. A brand new, highly accurate, rapid COVID19 test was given to me. In three hours, the doctors were able to confirm that I no longer have COVID19.
My initial response was joy, relief, as well as anger and frustration: if I was COVID19 free, why was I still experiencing some of the COVID19 symptoms along with newer, more painful symptoms?
I might no longer have COVID19, but I still feel horribly sick in my “recovery” stage:
For me, breathing is still not easy. Even in the few weeks from the first time I was admitted to the second time, my lungs became worse. I’m on quite a few prescriptions to help with this.
I haven’t been able to tolerate eating or drinking and have severe ongoing pain in my abdomen. Think about the pain of an ulcer and now imagine that pain everywhere. A LOT of tests were done. Apparently, when your immune system gets messed up from fighting COVID, everything else goes to hell. That is because all of the good flora in your GI tract needs to be restored.
One of my doctors used a metaphor of flora in a healthy GI tract as “beautiful green grass that helps things move along slowly. After having COVID, that beautiful grass has been burned up, and all that remains is dirt. In real life, we know that a mountainside that is only dirt is prime space for a mud-slide. Well, that is what a GI tract is like when there is no flora.” I’m on three medications to help treat this issue.
My skin has had immune reactions, including splitting, rashes, and eczema (which I’ve never had in my life until now). Enter two more medications. My menstrual cycle was affected.
I have a UTI from hell as well as another infection that women often experience accompanying this unpleasant infection.
There are other issues that my doctors are still looking into.
Lastly, even with really great insurance, the bills for testing, medications, and treatment have already stacked up beyond what I could pay. I cannot even imagine how life-crippling the costs are for people with limited or no health insurance.
Like lots of other Americans, if there is not drastic reform in the healthcare system, despite insurance coverage, I will probably need to start a GoFundMe to pay for the out-of-pocket costs that I have incurred.
I am doing all I can to rest and recover and I would urge you to do the same if you have been suspected of having COVID-19 or tested positive. I think it is fantastic to celebrate the good news of people being released from the hospitals, testing COVID-19 free. I also hope that we realistically evaluate just how “recovered” these folks really are–especially the elderly and the immunocompromised.
The bottom line is that we need to alter our frame of reference. COVID-19 isn’t a cold that simply returns us to our daily lives once it has passed. Rather than asking “Are you better yet?” let’s begin asking the question “How can I help you as you begin the journey of recovering?”
*”We Need to Talk More About What Coronavirus Recoveries Look Like.” New York Times. Lowenstein, https://nyti.ms/2K8bf75