Indefinitely Ill – Post-Covid Fatigue

by Maria on May 18, 2020

What to do when your body forgets how to be well

OK well this is going to be tricky to write because I’m not a doctor and it’s not medical advice, and the more I read around in the displacement activity I often do ahead of a difficult task, the more it becomes plain that striking the balance between speaking anecdotally from, in fairness, somewhat bitter experience, paying due heed to current but still unbelievably partial and fragmentary research, and employing the observational/confessional mode in an attempt to paint myself as a useful cautionary tale suddenly seems so much more complicated than it really needs to be.

Because I really only want to say one thing; if you have had Covid-19 (tested or not), and are getting to a month or two on and still feel like you’ve been hit by a bus, please, for the love of God, rest.

CONVALESCE.

Stop what you are trying to do and listen to your body as it tells you it needs to be quiet now. You will not ‘fight’ your way out of this. It is not a test of your character or your will. You need to stop and listen to the only body you will ever have.

Print out a fact-sheet from the Internet and press it into the hands of your loved ones whose patience with your infirmity is beginning to ebb – perhaps they are beginning to talk about it being ‘just stress’ or how ‘we’re all TIRED’ – and withdraw in whatever ways you can to slowly, vitally heal.

If you can remotely afford it, and even if you can’t really, take the time off work and school, church or party or volunteering of all kinds, withdraw indefinitely from every not-essential-to-life activity and commit an uncapped amount of time to your recovery. Maybe you can’t quite afford to, or maybe you really, really don’t want to ask for whatever financial help and longer timelines you need, but try and take the fatigue, brain-fog, sore throat, ringing in the ears, swollen glands, weird headaches, all-over body-ache and all manner of covid symptoms still lingering long after the blood-work says your body has cleared it and – and I’m sorry this is scary, but it may help – try to imagine still feeling like this a year from now, or five years or even twenty, and think about the finances of that.

Now calmly regard that fear and ask what it demands. See how this re-orders your priorities. Now thank your fear and put it away.

Think of post-viral fatigue as climate change for the human body. It’s here but not here; you acknowledge the immediate effects but haven’t really got your head around their implications. You need to invest heavily up-front and in the face of widespread disbelief to avoid medium and long-term catastrophe. Understand the threat is both insidious and in your face. Some symptoms are obvious and acute, but others you’re too mired in to even fully see. As you’re dealing with the thing itself, you’re also enmeshed in a struggle of knowing, trying to figure out what is real. Understand that recognising and dealing with this illness with the urgency and seriousness it demands may give you the best chance of coming out strong and whole. Understand that whether this happens is not entirely in your hands.

People outside of your experience can come up with a hundred reasons for why what’s happening to you is not serious or not real and why you should continue to do business as usual. Some of these people depend on you professionally and some financially and some of those latter may also be people who love you. Some of them may insist that you’ll be fine, you just need to power through as you’ve always done. Understand they may be speaking from inside their own fear, the fear that even if you do everything right you may still fall through the cracks and be lost. If this has happened to you for no good reason it could also happen to them, so this must not be happening to you.

I am labouring the possible unhelpful behaviours of people who love you in reacting to your suffering an unexplained and indeterminate illness because you may not have the time and energy to help them work through these feelings as you commit to your own recovery.

Time.

The time you have to deal with this is now and I believe it is more urgent than you have yet realised. You must urgently do as little as you possibly can.

Anecdotally, and increasingly in initial research projects, we are hearing of many people who have had non-severe cases of the virus experiencing prolonged recovery times from Covid-19. You don’t need a non-scientist to tell you this virus is new, it’s systemic and we don’t yet know its medium and long-term effects. The virus is from a family known to precipitate both immediate post-viral fatigue and also the kind of fatigue that lasts for longer than six months, is unrelieved by rest, and has no cure, which we call Chronic Fatigue Syndrome or, by some in the UK, M.E. ME/CFS is probably an overlaid polka-dot pattern of different conditions and syndromes, many of which are assumed to be psychosomatic. They’re not. But I don’t want to get into all that here. The little we know about how post-viral fatigue progresses, for some, into a life-changing chronic illness indicates that rest and recuperation in the very early days can be decisive.

So if reading this random piece on the Internet helps you give yourself permission to do the one thing capitalism forbids to the point of pretending it doesn’t even need to exist;

CONVALESCE

… then good.

I am neither a doctor nor a scientist, just someone who did not rest when they could have and should have, someone who has not had a day of feeling completely well in over twenty years. CFS changed the course of my life, and while I’ve made a very good one nonetheless, if I could reach back in time and tell my younger self to walk out of that stupid job and never go back, to crawl under the duvet and cocoon there until she was truly well, my goodness I would give her a good shake, then a firm hug and take her by the hand and put her to bed.

So, because we are creatures of narrative and because it is my only credential for writing this non-expert, wholly unsolicited advice, here is my cautionary tale.

I worked freelance in film and TV production. I’d already figured that wasn’t a long-term career for me, and that the Internet was going to have some interesting political effects I wanted to be involved in shaping, so I’d applied to a post-graduate programme in technology. I took a job as production coordinator on a mini-series in a gig I thought of as ‘one last heist’ to make enough money to go back to school. The job went from June through August. It was fourteen-hour days, six-day weeks. We ate irregularly and sometimes shared food. Sundays were for sleeping and laundry. Sometime in late July, a bug went around the office. Taking sick-leave is almost unheard of in film production. The producer was visibly shocked when the P.A. took a Saturday off with the bug. She came close to being sacked. So I powered through. We all thought it was a summer cold. Actually, it was mononucleosis. I stayed at my desk and limited my fluid intake because I was too weak to walk to the toilet. Some nights I feared I’d collapse while driving home and cause injury to others. The weeks passed and I got well enough to act more or less normal at work. We did a week’s location-shooting in Antrim. Our production office there was in a holiday park and one night when we finished work long after everyone else, the production manager and I turned on the water slide, stripped to our underwear and went whooshing down it. So there were some good, normal-seeming times before the collapse.

But I knew that all was not ok. I felt hollow, physically, like I had no substance inside and my outside was brittle porcelain. Or like that dream when you can fly without wings, but only until you notice it. I worked hard to not notice it. The job finished. Those few last days of late August I remember as waiting for the hammer to fall, for my body to be able to feel as tired as it really was. I thought I would go backwards a bit and then forward again. I went home to my parents’ house and that’s where I crumbled. At first in slow-motion, and then accelerating. Just falling. Falling. Mum brought me into town one day to the supermarket and before we’d got to the end of the vegetable aisle I went white and had to be helped to a bench outside. Part of me is still sitting on that bench waiting to catch my breath, waiting for what surely must just be normal tiredness or aerobic exertion to pass, waiting to feel normal again.

One evening I came down to dinner. It must have been mid-week as it was just me and my parents at the wooden table in the farmhouse they’d moved to after Dad’s hospital was closed. I said I knew they thought there was something wrong that I wasn’t telling them. I knew they wondered if I was pregnant or on drugs or if something awful had happened to me. I cried and said nothing had happened, nothing was wrong, I just couldn’t walk very far. It was my birthday that weekend. I remember blowing the candles out on the cake Mum had made, and her, Dad and my two youngest sisters singing Happy Birthday, and I remember the churning guilt at feeling so inexplicably unhappy in the face of these acts of love. I had that sick-pain of bereavement, but no one had died. There was a lot of pain in that house at that time, and also so much love. I felt that what was wrong with me was wrong to persist in the face of this hard-working love, that by being unwell the way I was, I was rejecting it.

It’s weird how the body can know things the mind doesn’t yet accept but feels them all the same. I was twenty-six and I would never be well again. It took a long time to consciously know this.

As I’m writing this I suddenly remember the stairs in that house, how it wasn’t a single run of stairs but had a turn I became grateful for because I would take the first three or four steps, clinging to the hand-rail and then, if no one was nearby, sit down and recover a bit before tackling the rest. From the first moments of this illness I was ashamed. Much of what I have experienced since has strengthened this association of weakness with shame, the need to hide my symptoms, to develop elaborate work-arounds so people will not see the truth hiding in plain sight. It’s remarkably easy to do.

At the kitchen table that first night, my parents were relieved but also seriously concerned. We’re a medical family and my mum’s immediate worry was that the extreme tiredness and pallor meant leukaemia. My dad called his new hospital’s senior physician and I was admitted the following Monday for a week of tests. I cannot tell you how happy I was that week. Now there would be an outcome. There would be a diagnosis and a treatment and my life would start moving forward again. And also, I could legitimately rest.

But as mid-week passed and test after test revealed nothing conclusive, I began to realise that one of my private fears was coming true. A couple of years before, I’d watched Todd Haynes’ film Safe, starring Julianne Moore as an affluent Californian housewife who succumbs to an indeterminate ‘environmental illness’ that no one except quacks really believes in, and which cuts her off from everything and everyone she loves. She ends up living in a weird white capsule on a new age retreat, burbling self-help sentence fragments like useless offerings to a distracted god. I remember thinking after I watched that film and read Haynes’ interviews about this character who retreats further and further from life, and how at each step her illness gobbles up the little she has left to offer it, that such an illness would break me, that being doubly punished by both an illness and its erasure by medicine, by society, would be unbearable.

When my diagnosis dwindled down to post-viral fatigue, I already knew that there are certain kinds of suffering that elicit not pity or compassion but a defensive anger and blame, and that this was one of them. The night before I was to be discharged, my physician did a last few neurological tests that proved sub-optimal but, again, inconclusive, then came and sat with me and explained how things were going to be. He said the illness was real, but they didn’t understand it yet, and that a diagnosis of exclusion was the best he could offer. He advised me to keep my own counsel, which I took to mean keep it to myself because other people would think less of me for being ill in this way. And that’s what I’ve done for two decades, referring to it obliquely if at all. Most people I’ve worked for never knew. But now I turn over that phrase again, I wonder if he also meant, by keeping my own counsel, that I should be guided by my own wisdom because so little else was available.

And that’s when the new course of my life began. I went home sicker than I’d gone in – it turned out much later that I’d probably picked up hepatitis in hospital – but now that I was ‘just sick’ and without a treatment plan, more symptoms just meant more symptoms and that was that. In the absence of a goal or formal support system or, really, any meaning greater than the fact of my symptoms, I imposed my will on my situation and carried on as I’d planned.

A couple of weeks late, I started my post-grad degree. I measured out my life in distances of about fifty yards, taking routes that allowed sitting down, and making sure that when I couldn’t avoid climbing stairs, no one I knew would see. I became near-silent because speaking was too costly. My social life came to an end. I now know that I could have and should have stayed in my parents’ house and just written the year off. If I had done that – and I was lucky enough that it would have been a possibility for me – I may have recovered faster or perhaps even completely. My mum later said she wanted me to do this but – correctly – believed I would refuse. I wished so strongly to be normal, to resume my progress and continue being the person I was always going to be that I completely fucked my chance of ever fully recovering.

And I’ll never know. Maybe I was always going to be one of the ones who doesn’t recover. The little we know about post-viral fatigue is that early and complete rest can mean the difference between a few months of illness and a lifetime of it. But we just don’t know for whom.

At every stage of the illness I was bargaining, doing the things I should have done to arrest it at the previous stage, not understanding I’d missed my chance. I blew past the last exit, years before I even learnt it existed.

Paradoxically, at other times in history when all we had to treat infection with was fluids and bed rest, I may have recovered fully, assuming I had a family to take me in. An old family friend who used to be Dean of Students at a US university told me that at the beginning of her career, students with mono would take a semester off and come back just fine. But by the nineties, because of finances and family breakdown, they’d stay in school and stagger on, and still be unwell a couple of years later. In our world of systemic economic risk born largely by individuals, and life-saving antibiotics that mean we only see what we can treat, infection is only visible when rendered acutely and finitely. Bodies that don’t recover when they should are assumed to be under the control of a broken mind. The concluding line of a recent Guardian article about people suffering a “long tail” of Covid-19 symptoms is; “The dominant feeling is relief that others are in the same grim situation, and that their health problems are not imaginary.” Still just counting their symptoms in days, the unwell fear not just a prolonged illness on its own terms but anticipate their abandonment if the course of the disease doesn’t fit into our foreshortened narrative arc. And they’re right.

Within six months the friend who’d sent me flowers in hospital was no longer a friend. My world split into people who seethed with impatience at the failure of my illness story to resolve in a satisfyingly binary conclusion, people who believed it must be psychological but maintained a tactical but distancing silence, and people who just didn’t have in them a need for it to be anything other than what it was. I could not have predicted beforehand who would fall into which group.

But there were gifts. I went to live with my grandmother for that academic year. She took me in and cooked for us each night, but not till she’d gotten me out of my coat, sat me down by the fire and poured a tiny glass of sherry for us both. (I couldn’t have drunk sherry till later in the year we were together, as I couldn’t tolerate alcohol at all early on, but that’s my memory of all our evenings together.) Me with my now chronic illness and my grandmother with her heart condition in the last year or two of her life – we were both operating at about the same level physically, and that time and the conversations and daily rubbing along together is one of the gifts in my life I’m most grateful for.

But if you’re reading this far because you recognised yourself in the post-covid symptoms above, or maybe someone sent you this link, I don’t want you to become the person who got sick and their life changed and became smaller but richer and you’re grateful for it all, really, because it made you who you now are. If you end up there eventually, then all power and compassion to you. But this may be one of the last moments when you have some agency, when aggressive resting could change your course.

I want you to see there may be an exit sign, and if you can, I want you to take it. I want you to resume your normal life, bumptious and blithe, barely able to recall how ill you now feel, how fearful you truly are. I want you to have read the cautionary tale, heeded the warning, profited from and promptly forgotten it. That is the future I want for you.

The pathways to ME/CFS seem broad and clearly marked – post-viral fatigue related to corona-type viruses like SARS and MERS form a classic entry-point, as was mine via mono – but the closer you look, the murkier it all gets. There is so much we don’t know about who gets sick from Covid-19, who stays sick and why. We don’t understand why some people recover from post-viral fatigue and others become chronically ill with it. We have so very little understanding or control. But we do know, both intuitively and via some research findings, that ‘aggressively resting’ in the early days of recovery can help. It might be the thing that helps you or someone you know.

Most of what I read so far about post-covid symptoms seems to have entered via a side-door from a parallel universe where the notion of people not immediately or perhaps ever recovering from a virus is entirely novel. Inevitably, there’ll be a distancing attempt, an effort to say post-covid is different to other post-viral syndromes, implying that it’s actually real. Personally, I can take this on the chin and barely register it. Of course people don’t volunteer to join a stigmatised group. What worries me is that the new urgency for researchers in uncovering the mechanisms and pathways to the more chronic syndromes may mean they fail to link up with existing research, and fail to notice existing practical knowledge. I hope we can avoid this but I’m not confident it will happen, and meanwhile, time will be lost, time when the first waves of sufferers may have been helped. Absent any proven treatment for the virus itself, all we have is rest. It won’t help everyone but it may help some.

On the one hand, there has never been a better time to convalesce. Everyone knows covid-19 is a beast, and many know it can come not in one epic bout but in a sine wave of recurrence and retreat. Everyone’s dealing with it and hearing about it at the same time. There’ll never be an easier time to down tools, try to access financial assistance, stay home and let the body do what it needs, taking the time it takes. When I was first ill, I most feared having to explain a gap in my employment history. Post-covid sufferers need worry far less about this in a lockdown.

On the other hand, we live in a society with a shockingly strong immune response to inactivity, however ‘legitimate’ it may be. Here in the UK – and also in the US – the essentially eugenic policy for dealing with the pandemic bodes ill for how people left with lingering or chronic conditions may fare. Put it this way; people who’ll still be sick next month and next year don’t exactly fit the implied official narrative that only the old, the brown-skinned or those foolish enough to have underlying conditions need worry. The white, able-bodied, healthy and young can quickly slip into the category of acceptable neglect – delivered with the impatience, blame and rising contempt we reserve for the indefinitely ill – if they fail to return to productivity in the expected time. Those who already inhabit a state category for acceptable neglect won’t be surprised by any of this.

If all of this is a barely perceived haze that you can just about intuit is worrying, I hope you never know any more about it. (Though I also hope your unwelcome knowledge of the contingency of health and our punishment of the ill might inflect your future politics.) I don’t want you to join me. I don’t want you to know what I know. There are plenty of us already in this lifelong No Man’s Land of not ‘properly’ ill and not ever well. I want you to dance lightly around the trapdoor I fell through.

One last thought. Perhaps it will go easier for you if you think of fatigue not as a symptom to be treated but a state to be entered fully. It’s not a sign of something particular gone wrong but rather the body’s generalised cry for help. Heed it and give it its due because no one is coming to help and this body is all you’ll ever have. You still hold all the things you ever wanted to be, but for now you are a body in a bed, divided by impossible stairs from the life that still goes on below, a body on a bench, waiting to catch its breath, almost able to reach out and touch the life that continues an arm’s length away, a body moving through the slow soup of time, waiting. Waiting.

{ 16 comments }

1

Russell Arben Fox 05.18.20 at 2:10 pm

This is a powerful essay, both personal and political in the best sense. Thank you for sharing it, Maria.

2

Maria 05.18.20 at 3:39 pm

Thanks, Russell. You’re very welcome.

3

Doug K 05.18.20 at 5:16 pm

thank you Maria..
my son has some variant of CFS/fibromyalgia, ill-defined and no clear diagnosis, only an ongoing fatigue and pains. I have some empathy for this as I never recovered from a bout of cerebral malaria at age 28, of course went back to work a week after the ten days in intensive care: a new habit of caffeinated sodas got me through the work day, mostly. Broke that habit but never recovered. As Paul Simon sings, we get better but we never get well.

However there are those who are sure he’s just not being man enough to power through the malaise.. as you say, “there are certain kinds of suffering that elicit not pity or compassion but a defensive anger and blame”

4

Barb Roseman 05.18.20 at 5:28 pm

Thank you for this, Maria. There is so much we don’t know about ME/CFS and that you are able to recognize it as a post-viral complication is refreshing. We also know next to nothing about this particular coronavirus illness and it’s long term effects. Bringing these two areas of knowledge together will be so useful for survivors with ongoing complications. I was reading this weekend about the lack of shared knowledge amongst doctors treating Covid-19 about what’s working, what isn’t, and how to support those who “recovered” but are clearly not “well.” So much of the handling of this illness has been poorly managed and communicated knowledge. I don’t have a fix, but essays like yours are important for assuring those with complications that it is real, ongoing, and to take it seriously.

5

JanieM 05.18.20 at 5:44 pm

This is the most amazing essay I have ever read. I am so utterly bowled over by it that I can’t find any words to say except thank you.

6

DCA 05.18.20 at 5:52 pm

Moving, scary, informative, and very useful. Thanks

7

Bruce Baugh 05.19.20 at 5:47 am

Thank you, Maria. This is the thing I need to share with some people I care about.

8

WrathOfGod 05.19.20 at 10:35 am

Thank you for everything you’ve included in this piece. An hour after reading it I’m in emotional turmoil. I want to send it to everyone who didn’t believe me about illness, including all the medical persons who dismissed symptoms with that handy word ‘psychosomatic’; I want to send it to those close to me who kept cajoling and pushing me when I was incapable, over-riding my own instincts by implying how disappointed they were that I wasn’t doing more to ‘be well’.. I could go on. I recognise so much of your history (though mine differs, too, and I”m a lot older than you). I’m also sort of trembling with carrying the long dangerous snake of anger which has been around for 40 years of being ill but without any useful diagnosis or help. I’ve wanted to and tried to write versions of this about my own experiences and given up because I didn’t have the courage to request attention or handle the emotional fallout. Thank you for writing it. Thank you for encapsulating so many useful and important elements.

9

Jon M 05.19.20 at 3:22 pm

Hear, hear. The only thing I can imagine adding is that ‘resting’ does not mean strictly lying down doing nothing. Gentle and relaxing movement is an important part of resting-healing–think Qi Gong, going for walks, etc., as the body feels ready. You’ve got to move your lymph and your blood to let your system heal as it knows how–distributing nutrients and oxygen, scouting out remnants of infection, all that. Activity does not have to be the do-or-die 110% type of workout that is usually sold to us.

10

JakeB 05.20.20 at 4:06 am

Bless you, Maria.

That line “Part of me is still sitting on that bench waiting to catch my breath, waiting for what surely must just be normal tiredness or aerobic exertion to pass, waiting to feel normal again.”
That’s something that belongs in a Townes Van Zandt song, or the like.

11

AG 05.20.20 at 5:01 am

Wow. Wow. Thank you for writing this. It’s beautiful. Truly. (And now I want to send it to everyone! I am 6 weeks post-fever, post-Covid-19 and pneumonia, and I am still so godawful tired almost every single day. And with headaches and chest pain that come and go, as well as some other random things like finger pain and tinnitus, which also come and go and come again. EKG and chest x-ray are normal. Waiting on bloodwork and echocardiogram. Wouldn’t be surprised if everything came back normal…)

Work asked me if I wanted to go on short-term disability today, since I seem to be having so much trouble getting work done, and I said, “No, I want to work!”

But what if my body needs to rest, not work?

12

Bruce Baugh 05.20.20 at 5:04 am

Maria, a couple more thoughts.

#1. I developed an auto-immune disorder when I was fifteen, in 1980. This post says some things about the experience I never did manage to put into words so well. So, thank you for that.

#2. Do you know about Brianne Benness – @bennessb – on Twitter? She curates amazingly productive discussions on disability matters, and she’ll want a link to this.

13

ozajh 05.21.20 at 7:57 am

I didn’t have symptoms as bad as you describe but I believe to this day that I suffered from undiagnosed mono while at University back in the 70’s, unfortunately after I had decided to live on-campus.

Life-changing, and not in a good way. Most obvious was going from very good but not brilliant grades to requiring 5 years to struggle through a Pass degree, but looking back 40 years the total inability to find any energy for socialising/networking may well have finished up being more significant.

And yes, I believe this may turn out to be very traumatising for those suffering the aftereffects of COVID-19.

14

Anna Scharf 05.21.20 at 10:37 am

This is one of the most beautiful articles I’ve read. It’s poetic, moving and full of hope.
You have a rare gift to be able to express yourself so well.
I wish you all the best.
Anna

15

Jonathan Monroe 05.21.20 at 11:23 pm

Thank you. I had mono in grad school over a decade ago and was able to get off at the second stop you mention. I can’t say the academic career destroyed (my key result was scooped while I was off, so I had no publishable work) was particularly promising, and Iwas lucky to get my health back (mostly – I am still taking steroids to manage the childhood asthma that returned after a 15-year remission). My wife was less lucky when she got hit – she was unable to work for four years and only recovered with experimental immune treatment. Supporting her through it could have cost me another career if I hadn’t been lucky enough to pick up a right-place-at-the-right-time write-your-own-ticket type skillset in the intervening years. Post-viral fatigue is real, and it will ruin your life, and it will make you even more of a burden on your family and friends than you think you are now. Don’t take avoidable risks. Based on my social circle, COVID causes post-viral fatigue in several percent of young adults who get it. Obviously we don’t know how many of those cases will be long-term (pray that it is not too many).

Interestingly, if it becomes endemic COVID will be the new mono. Most people will be immune after an asymptomatic infection as children. A few people who get it as young adults will suffer months of misery. And it will earn its reputation as a menace based on the post-viral fatigue cases.

16

Jonathan Monroe 05.21.20 at 11:33 pm

Also, to state the obvious, getting to herd immunity means several percent of your people end up like this – including the whole “burden to those around them” bit with all that means for the pro-virus lobby’s precious economy.

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