The grief of chronic fatigue

How I’m learning to make sense and meaning after four years of burnout and long Covid

Hello, I’m Philippine and to be honest, I feel like a beginner at life – I am forever trying to make sense of it. You can find my attempts at this, plus reflections, musings and experiences right here, in my newsletter. Subscribing is free! For everyone who feels like a beginner at life, and wants to connect in some way.

Recently I had that moment of realisation – it’s been four years. Four years of coping with chronic fatigue due to both burnout and long Covid, of not working, of not being able to do the things I want to do, hell, of being unable to do the things I don’t want to do. This was far from a neutral observation, nor was it simply the amazement and shock that everyone experiences every now and again when they think about time passing. Instead, my realisation was tainted with grief, painfully thinking about how much I missed out on.

Nevertheless, whilst writing in my journal about this, I realised that I had also been released from the life I had before – a life not suited to who I am, one where I worked too hard and was always tired and stressed, where I was holding myself to neurotypical standards, trying to live the life I thought I was supposed to lead, not realising there even was another option. Since then, I have gained a new and profound understanding – through my illness – of life and of myself, my needs and wants, and what truly matters to me.

What did I miss out on, then? When I truly think about that, it becomes crystal clear to me that I didn’t miss out, not really, because of course it was going to go this way, it couldn’t have been any different. I was working and living myself into burnout, so yes, I did burn out. And if magically I wouldn’t have, then I would’ve continued to live this life that didn’t suit me, working too hard, having little free time and always being too tired to do much with it. So, goodness, does that mean I am glad that it happened? I think so.

However, that’s not how I feel about it all the time, and most certainly not how I felt when I was in the depths of my fatigue, nor during the first shock of my ‘it’s been four years’ moment. But perhaps feeling this way some of the time is enough.

When I told my boyfriend about my realisation, he said that it sounded a lot like acceptance, one of the stages of grief. And he is right. Seeing the inevitability of it all and being at peace with that, was an experience of acceptance.

Of course acceptance is not the only stage of grief. And grief it is, the term seems completely accurate, because it concerns a pain over losing something. Losing my energy, losing time, losing life as I knew it, the future I thought was coming, my ability to do basic things like being in a room with multiple people, cooking, listening, working, etc. And that pain has come in the form of all the stages of grief: denial, anger, bargaining, depression, and indeed acceptance. These stages aren’t linear or in any set order, I’ve experienced them all multiple times and I’m sure I will again.

Looking back at these years of illness through this lens of grief and its stages is giving me a new way of making sense of my experience. It’s a way for me to be in charge of the story I tell myself about what I went through. A different approach to find meaning in it all.

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Unsurprisingly, it all started with denial. At first I thought ‘yes, okay, I am really tired but it’s just because I haven’t been sleeping enough’. (Oh, if only you knew, little Philippine.) And I thought ‘this can’t be anything resembling overwork or burnout, because I’m actually happy’. I had just graduated, I was living abroad in London, and I had just met my boyfriend. Ironically though, it’s probably precisely that happiness that gave me the strength to keep going for so long – too long.

Finally, I had almost no choice but to stop, take a break from work, rest, relax and regain energy. ‘Three months should be plenty to prevent severe burnout’, I said to myself. After two months off work, though, I wasn’t feeling much better, and it was only then that I had to conclude I already was in burnout, a severe and massive burnout, in fact.

This is when, after a bit of relief and letting go, sinking into the burnout and letting it happen – it had all gotten worse, I was now pretty much unable to make myself breakfast or even clean my retainer – anger came in, with full force. I had some kind of frustration outburst regularly. (Now, knowing that I’m actually autistic, I would simply call them meltdowns, but at the time I had no idea what suddenly took over my entire being.) They came about partly due to overstimulation and a lack of energy to deal with my emotions differently (although these outbursts were, ironically, exhausting themselves), and partly because the emotions themselves were so incredibly strong.

I was furious that this had happened to me, that I was going through this hell, that I had to cope with something without the energy to do just that. It was unfair, the opposite of what I deserved, I thought. I had worked so incredibly hard and I got punished in return. And so it went on, me squirming and shouting at life desperately.

In addition, as a kind of twin of anger, there was bargaining: the if onlys and the what ifs. I thought about how and when my burnout started and where I should have made different decisions. If only I had stopped work earlier, or what if I had never started that horrible TA-job in the first place. When my brother came over that one time and his voice was a bit hoarse, I should’ve suggested that he go home just in case it happened to be corona (it was and I didn’t ask him to leave – we all caught it and were left with long Covid).

Apart from these what ifs, bargaining has come, and still does, in the form of the attempt at control over my fatigue and my recovery (I wrote about this more elaborately here and here). I was almost obsessed with how tired I was and why, and even more so, with what could help me recover, what I needed to change and try out, coming up with recovery strategies, and thinking and talking these things through endlessly.

All of this came with an enormous fear. A lot of the time I was terrified that I’d never recover. And still to this day, every now and again when I’m feeling tired, have pms or just feel wobbly, that fear creeps back in. Most of the time I fully believe that I will recover. And if I start doubting it, there is still a part of me who knows that my past and future self hold that faith for me. Nevertheless, this fear was a big part of what I went through. And, even though it isn’t one of the stages ‘officially’,¹ fear very much has been related to my grief. It’s that terrifying ‘is this ever going to be okay’-feeling. It’s almost like a mirror: the other stages projected into the future, anticipating the yet to experience pain.

Interestingly, the sadness was often more hidden, very much there but mostly showing itself implicitly, disguised as anger and fear. Therefore, I think this might be where there’s still more healing opportunity for me, to allow the sadness to be there in its pure form. Yet remembering what I missed out on has been so painful, that leaning into that sadness has often seemed unbearable.

This has led me to seek reassurance and control instead: asking my boyfriend about my recovery, planning how I can make up for what I’ve missed out on, thinking through the upcoming years and how I can make sure I get to do all of the things I want in them. But the truth is that I don’t know what the future holds, and I’m just sad. Sad not just for what would have been if I hadn’t gotten ill, but more so for what never could have been, an idealised version of what I wish had happened.

And that’s just it. Acceptance comes from the realisation that what I’m mourning is indeed an idealised version of what never would have happened anyway. Acceptance arrives when I revel in all of the things that I would have had to miss out on if it didn’t happen – all the lessons I learnt, of resting, playing, giving myself compassion, homing in on my true values, and allowing my feelings to be. Acceptance also grows its roots through the other stages of grief, and flowers through using their names to describe my experience of them, making sense of and coming to terms with it. Finally, acceptance appears through my faith in recovery.

Yes, the reward is high indeed. And yet, the cost is just as high. I would never pay the cost if I had the choice, but I would also never give up the reward if given the opportunity. This means I sometimes find myself in the high cost camp and sometimes in the high reward one. There is a kind of balance there.²

I’ll probably never reach a point of permanent acceptance, instead I go through the stages of grief again and again in different ways each time, and so acceptance too. The repetition does, however, seem to deepen the groove, hitting acceptance on an ever deeper level.

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These five stages of grief were originally coined by Elisabeth Kübler-Ross to describe what people go through who are dying. It then became widely used to describe the apparently very similar process of grief. However, in my case I think this original use is actually very fitting, because even though I wasn’t technically dying, a part of me was. And I was pretty much dead for a while, it felt, but right now I’m in the middle of a kind of rebirth, no longer dead, nor quite reborn yet (I write more about the liminal space that this is in this post). And I think that an important part of being reborn is the sixth stage of grief, as David Kessler described it: finding meaning.

In grief the pain can be overpowering a lot of the time, but at some point a little bit of space for some light opens up. More and more space has been opening up for me, ready to be filled with meaning – finding meaning again in life, and in my case also finding meaning in what I went through, or rather in what I’ve gained from going through it all. I don’t think this can be forced, all I can do is be open to it.

I’m waking up from the autopilot mode I used to live in, and making sense of my experience by writing it all down. I am in the process of gaining my life, perhaps for the very first time.

When I felt at my lowest I often thought of a scene from Grey’s Anatomy. I can’t remember the details, but this is how I recollect it (I might be misremembering, but that’s not the point here). A girl graduating from high school ends up in the hospital. She says that she doesn’t want to die, because she hasn’t had the chance to live yet. All she’s done in her life is work hard for school, and her life is only about to start now that she’s graduating. Yet it never does start, as she passes away there in the hospital.

I had always found this scene particularly poignant, but now it suddenly seemed like I was living that scene every day. Until, slowly and with ups and downs, I started to find and make meaning again, topping up my tank of life force that had been empty for so long. I am still on that path and may forever be, but what counts is that I am on it, I am starting to live.

What is your experience with fatigue, illness, grief – or waking up to life?

In this post you can find out a little bit more about me and my journey.

1. Of course, there is no ‘official’ when it comes to grief anyway. It’s different for everyone.

2. Of course this doesn’t apply to the grief for a loved one who passed away. I am only speaking here about my personal experience with grief for what I’ve lost because of my chronic fatigue.