Living with Long Covid

“What’s next?” My doctor asks, clasping his hands together and leaning forward seriously in his chair towards me.

I take a deep breath and pull out my notes.

“There’s a new study showing a medication called metformin has been proven to assist with long covid symptoms. I’ll link you the research paper. My brother says that his doctor just put him on low dose naltrexone to help with the POTS symptoms, so we should try that, too. And I’ve found a long covid clinic where they have a comprehensive panel of doctors that can check out my symptoms, but I’m going to need a referral. There’s also an online functional medicine doctor based out of California who says that he specializes in long covid, histamine intolerance, heat issues, candida and auto immune disorders so I've booked an online appointment with him. And a friend referred me to a Chinese herbalist and acupuncturist that I’d like to talk to you about. Also… I’d like to try a long term low dose steroid - like maybe 1 mg of prednisone daily? - so that I can have energy to work.”

He surveys me, nodding and contemplating these notes.

And I am struck momentarily by the absurdity of the situation.

My doctor is sitting here, asking me what we should do next… And listening as if I am the expert in the room.

But then again, this whole pandemic has been just as absurd. Nobody knowing what to do, all saying conflicting things, all going in their own directions and trying to force “normal” to happen again.

And my Doctor is only a local GP, he is not a long covid specialist. So of course he has no idea what we should do next.

So here we are. Doing the best that we can. One thing at a time.

Which pretty much means that I'm scouring the internet between my online coaching students, poring over long covid forums, calling doctors and specialists all over the country, researching and investigating. Searching for answers, solutions, for any insights at all into how my body went from being fit and healthy to chronically ill, pretty much overnight.

I think about my friend the other day who, upon learning that I had long covid, texted back “Well, nothing that good diet and exercise can’t help!” And I laughed out loud in response to the text in my hand, doubling over in mirth and later, shaking my head at the irony of those words.

She had no idea - of course she didn’t, no one does - that her advice was moot. Long covid means I can't exercise, due to post exertion malaise. It means that I get short of breath and chest pains simply trying to walk to my mailbox in the morning. She has no idea that my body is having severe allergic reactions to foods with histamine, that I’ve been on a diet of nothing but rice and chicken and sweet potatoes for months now and am rapidly losing all my muscles as they atrophy from chronic fatigue. Last checkup at the doctor, I weighed 105 pounds, which means I’m severely underweight and still losing body mass despite my best eating efforts.

That’s why it was so funny.

My poor friend had absolutely no idea at all what she was talking about. But that’s not her fault. Nobody does. Ignorance is bliss and the media has kept everyone entirely blissful and ignorant about the harsh and difficult reality that has become long covid for many people.

No one wants to hear that a sickness passed off as “nothing more than the flu” by political parties is actually a chronic and devastating, debilitating disease that lingers. No one wants to hear that over 80% of hospitalized covid patients are still experiencing symptoms four months later. And that covid survivors are having issues eight months after recovery in massive numbers - that a perfectly healthy 30 year old, like me, is now disabled.

Disabled. Why is that term treated like such a dirty word? To be honest, I hadn’t given it much thought until my diagnosis. What it meant to be able-bodied. That thought had never crossed my mind. Until the past eight months of crying, laying in bed, struggling to have enough energy to dress and feed myself. Until the chronic fatigue and exhaustion forced me to go see my doctor who, after labs and blood testing, said “It has to be long covid because there’s simply no other explanation. You have a perfectly healthy body. All your tests are coming back normal. Chemically, you are a young person in the prime of your life… But. It’s clear that your immune system still thinks that you’re sick, because it’s still inflamed and fighting off a virus… Even if that virus is no longer there.”

“Well, what do we do now? What treatments are there?”

“There are no treatments. I’m sorry. Long Covid is still relatively new and there’s no medical consensus yet on how to deal with it.”

“So… there’s nothing we can do? Nothing at all? Do I just need to keep resting? Isolating? How long will this last?”

“I’m sorry”, he said, shrugging, “but none of that will do any good at this point. The only thing I can tell you to do is... to go and live your life.”

Live my life.

I stared back at him, agape. I was floored. Stunned. Speechless. No words came in response to such a trite oversimplification of my current situation. I couldn’t fucking EAT normal food like a normal person, couldn’t go for walks outside, couldn’t drive myself anywhere, couldn’t do literally a single goddamn thing that I used to do on a normal daily basis back when I had been healthy… and his medical advice was to just LIVE MY LIFE??

The rest of the appointment was a blur. I don’t remember it. I was reeling.

In the car, my momentary shock shifted into pure and unadulterated rage. I was angry. Furious at everyone - the politicians who doomed us all, the absolute failure of our governments’ response to handling a pandemic, and now finally at the healthcare system for its disgusting apathy and massively unhelpful attitude towards a debilitating, chronic illness.

“Live my LIFE? What kind of ridiculous advice is that?” I fumed to my boyfriend, who was patiently driving me home and he nodded back sympathetically. But he didn’t know what to say, either. So I glared out the window as hot tears filled my eyes. What the literal fuck. Live my life. Doesn’t everyone know that’s exactly what I’ve been trying to do this whole time? Didn’t my doctor think that’s obviously what I would be doing already if I wasn’t sick and fatigued every single damn day?

The emotions were overwhelming, the self pity and grief for the life that I’d lost was so vast that for a long time I was afraid of getting stuck there - trapped in that endless landscape of regret and sorrow, weighed down by a heavy, heavy bitterness and longing for what had been before.

Before. Was its own time. And now, the after.

My life has been split into two pieces, sliced cleanly away like a cleaved fruit. There’s the before, when I was young and exuberant, energetic and capable of anything. And there’s the now, the after, where I consider myself lucky to get out of bed in the morning without falling over dizzy from the movement, or to be able to swallow down a meal of rice and boiled chicken, shredded into small and easily chewable pieces.

Before was going out to restaurants with friends and drinking with joviality, able to eat and order anything I wanted off the menu, staying up late at night in the lake house after a long day of playing in the hot sunshine and enjoying a lush watermelon. Before, meant running laps around the block and lifting weights, glorying in my body’s strength and vitality. Before felt courageous, hopeful, like unlimited potential and freedom, a future full of dreams and infinite possibilities.

There was so much that I took for granted, before. And now?

Now is this very moment. This very day. Because that’s all that I can handle. Now is tracking my heart rate and water intake, cooking all of my own meals at home, staying inside to regulate my body temperate and getting all of my social interaction through the internet. Now is laying in bed, or sitting on the couch, or in a waiting room at a doctor’s office. Now is counting calories to make sure I’m eating enough. Now is being my own advocate. Now is telling my doctor what we are going to do next. Because nobody else is going to do that for me, now, but me.

Now is recognizing that this is all I have. Right now. I am not guaranteed a single second more and have never been more aware of my own mortality than I am right now. That there’s a possibility that every time I talk to someone, it could be the last time. And I don’t mean that to be morbid, it’s just honest. My friends could also catch covid or long covid, get sick and be unable to talk to me anymore. Or, you know… there's another more obvious alternative which I refuse to discuss. One of my friends contacted me this week by saying “I just saw that a 36 year old died from long covid and it made me think of you” which was the most depressing way I’ve ever heard of to start a conversation, but whatever, I understand their point.

Nobody knows what to do next. What to say. My friends look to me for answers, to reassure them that everything will be fine. But I don’t know what to say, either. So all I can do is be honest, forthcoming, and present. Right now. Because right now is all that exists.

None of this piece should be taken or used as medical advice... but if it helps someone else out there or makes one other person feel less alone, or makes someone more understanding of long covid, that’s all I can ask for.

And for the record, I’m not giving up. If you need me, I’m going to be fighting for my life, advocating, researching and being honest.

Because I've got my doctor's orders. And now...

Time to go live my life.