The Truth About My Health

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I had Covid early last year, before any testing was available and before we knew much about what to expect. I decided to document everything that was happening with me because I knew that millions would soon be infected and just as scared and alone as I was and I needed people to understand if I suddenly just stopped posting.

What I didn’t talk about much was how much I hate talking about my health. I have always pushed myself too hard and punished my body for not being infallible as I have tried to overcompensate for my gender professionally with my intense output of work. After my first few years practicing law, I had to accept that I had nearly killed myself working 80 hour weeks and not eating or resting properly.

My adrenal glands have been fried ever since then, which means if I go hard my body instantly feels it and I am forced to retreat into some timely and bothersome self-care. I hate it. I want to be indestructible and go non-stop. I thrive on productivity and falling into bed at the end of the day with the exhaustion of my hard work hovering over me like a halo. I am far too hard on myself.

After my bout with Covid in March of 2020, I was overwhelmed by the kind support and encouragement I received from those who only knew me as an online presence. People rallied around me and cared for me in a way I never realized I needed. Once it became clear that I was going to get through the virus without needing hospitalization or that dreaded intubation, I began to feel a sense of obligation. I felt like I had to reassure everyone not to stress and worry — that I would be fine — that I should not be a source of more concern for them.

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For the last year and a half, I have been quick to reassure anyone who inquires that I am doing really well and that I will be fine. I was one of the lucky ones and I make a point to remember this often — even as my symptoms languish on years later.

I am a lawyer and a journalist and I try to be exact when I publish anything, even if it is my own assessment of how I am feeling. But, the lack of comprehensive testing, combined with the general gap in knowledge within the medical community regarding the after-effects of Covid in some of our bodies is truly overwhelming.

I didn’t test positive for Covid, but I know I had it. By the time tests were made available, it was several weeks out from my initial infection and those tests were unreliable. I have no doubt this is the case for many of us, who have been dismissed or overlooked by medical professionals when we are asked if we ever tested positive after providing a laundry list of our symptoms.

The truth is, I never fully recovered from Covid and it physically hurts to say that, even now. After the many medications and inhalers that I used to treat the virus initially, I was still left with a mediocre level of health, one that required that I stop at every floor when climbing the stairs to catch my breath. One that now mandated I have my rescue inhaler with me at all times.

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I have had two secondary sinus infections that I’m still not sure are completely gone and I have had to double the dose of my daily inhaler in addition to adding nebulizer treatments at home. There have been times when I was on a Facetime call and someone would notice that my lips were purple. My oxygen levels would be way too low…I’m telling you I could do medical triage in an emergency, thanks to all of the Covid gadgets I now have. I would have to calmly sit up and focus on deep breathing for 15 minutes to get my levels up and the color to return.

My pulmonologist has no clue what is going on. The urgent care doctors have treated me with antibiotics and steroids, which have helped and given me advice about how to proceed, which has not helped. Last week the emergency room personnel all had a perplexed look as they x-rayed my lungs and did ultrasounds to make sure my body was not in crisis. The sweet security guard who caught me as I was passing out at the entrance was pretty sure I was dying, but none of the tests indicated what the problem was. I felt crazy and so embarrassed for wasting their time.

I also know that I have had the delta variant as well, despite two negative tests. I know this because I have every symptom of the virus and my mother, who I’m pretty sure I gave it to after flying home in May, has also had the exact same issues barring the lung problems. I don’t feel right talking about it publicly because I have not technically been diagnosed, so I am alone again in determining my own medical conclusions and my course of action for recovery.

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It has now been over two months since I got ill after traveling on a plane and my symptoms continue to cycle like clockwork: terrible headache in my sinuses and jaw and neck tension, followed by a day or two of feeling like I have the flu and curling up in a ball to tense-sleep for hours. Then the stomach pain kicks in. It’s more like extreme intestinal pain with cramping and aching like nothing I have ever experienced. Everything I eat makes my stomach swell up from a lack of digestion and I either stop going to the bathroom altogether or can’t stop.

Then there’s the scariest symptom: my breathing, which is nothing like my asthma symptoms that I am used to. It feels like someone has grabbed me around my ribcage in an intense bear hug and is squeezing me so hard. It is very difficult to breathe in, which is the opposite of an asthma attack which typically makes it hard to expel air. I have been treating it with more inhaler medication, but I know now that it does nothing to help.

I have to walk up the stairs like I am very old for the several days out of each week that this issue flares up and I have to move at a very slow pace. I have tried changing my diet a million times, but nothing seems to help with these symptoms. The inactivity and the uncertainty can also cause physical depression in my body from time to time. I moved more than two months ago and I am still living amongst packed boxes and clutter. Anyone who knows me personally knows that this is not how I typically do things. (One time I unpacked an entire apartment in a day, including decorating, organizing, and arranging.)

Yesterday, a good friend sent me a link to a Twitter thread where another woman was explaining what she had been through and how hard things have been for her. It made me feel so much better to know I was not alone and that I was sick, despite an ongoing lack of treatment. I was enraged that we have all been left alone to navigate this post-Covid terrain in the midst of another huge viral surge thanks to the idiots with a death wish, who are refusing to help by getting vaccinated.

(Photo via Getty Images)

Then I remembered the first rule of the human condition, that I learned thanks to Twitter: if it is happening to me, it is happening to a lot of people. If someone like me is hesitating to talk about this, then there are many of us in the shadows who are scared and alone and feel like this is how they will have to live from now on. Then I thought about another thing I know to be true: if we all start to talk about it, we might get some answers and at the very least feel less alone.

So, I’m talking about it now and I encourage you to do that, too — we are going to have to figure this one out together because everyone else is a little tied up at the moment. For all of you who have been at 60% for over a year and are scared to death to talk about it or even acknowledge that it’s really happening — it’s time to face our fears and get to work. Nurse Vanderpool, amateur caregiver, and eternal optimist…reporting for emergency Covid long-hauler triage duty.

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Amee Vanderpool writes the SHERO Newsletter and is an attorney, published author, contributor to newspapers and magazines, and analyst for BBC radio. She can be reached at avanderpool@gmail.com or follow her on Twitter @girlsreallyrule.

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