The Last Piece of the Puzzle

I read just this past week that no matter how many false dawns you may have experienced trying to get over anxiety issues, keep on trying, because you will make progress. And although these past weeks have been somewhat turbulent for me, I’ve had an epiphany that has finally made sense of the past fifteen years of my life. All long term visitors to this site will be aware that I am a recovering chronic fatigue sufferer, and it finally occurred to me that the original illness that set it all off, back in December 1997, was an experience of proper trauma. I’ve researched trauma, written about it and lectured on it, without ever putting two and two together, but then I think of trauma as being caught in a bomb blast, or abused by a relative, and so much of the time I’ve been trying in any case to pretend – with no success of course – that what happened to me was negligible and unimportant.

I’ve never written about this part of my life on this blog, as writing is the place where I feel most like me, and least like I did in that crazy, screwed-up time. But in my head I’ve gone over and over it, trying to figure it all out. Back in the autumn of 1997 I was constantly ill with low-level infections because I was utterly exhausted. But mid-December I started to feel unwell in a way that frightened me because it was unlike anything I’d ever experienced before. Every day I felt worse, even when I didn’t think it was possible to feel worse. Eventually I was in bed, unable to eat, sleep, talk, or move much, wracked with horrific headaches, weak and sick and terrified, unable to make sense of what was happening. My son was three years old, we had recently moved house and knew no one; no family was close. I had to return to my parents in this state of complete physical shut-down, with no way to explain myself. The worst thing was feeling there was no medical help. I knew there was something wrong with my lungs, but when I’d rung the surgery and asked a doctor to come out (and in this country they are very reluctant to make house calls) the doctor was rude to me, said he had a roomful of patients with chest infections and didn’t understand my problem. I wasn’t about to argue with him. I was 28 years old and I thought I was dying.

There was nothing like a recovery. Every night I assured myself that in the morning I’d have turned the corner. It never happened. With almost imperceptible gradualness, I began to eat again and to sleep. When I first got out of bed to shower, several weeks after taking to it, I’d lost about a stone and a half and looked like I’d just been released from Auschwitz. Over the months that followed, there were constant set backs when I’d feel almost as bad as I had to begin with, my energy was so depleted, and as soon as I tried to do a little more I’d feel dreadful again. I’d managed to get to a local doctor in January who thought in retrospect I’d had viral pneumonia. But even by the next summer, the next autumn, I was so scared because I was still very unwell and couldn’t turn it into a story that made sense: all I knew was that I’d woken up as the corpse of this narrative, sandbagged from behind by my own life.

So, it was trauma for me. One of the neuroscientific beliefs about trauma is that in the wild confusion of the event, the hippocampus in the brain fails to put an end-of-file marker on the memory download. It never manages to mark the event as finished and over, hence the tendency in trauma for the sufferer to fall into the belief it is happening again. For me, I literally could not put a marker on my experience that said: And now I am well again. I felt unwell, for the majority of the time, for the next nine years. And how crazy was that? Everyone knows that the illness story moves swiftly into recovery followed by the closure of convalescence. That was not the case for me. But I knew there was a large anxiety component in my illness from the beginning, and I have to wonder now how much was the virus attacking me in a rotary manner (which is common in viruses) and how much was the trauma, endlessly replaying on my body.

Trauma is notoriously hard to recover from because the sufferer is so vulnerable and their entire sympathetic nervous system is wrecked. The psychologist Pierre Janet said the first stage to recovery is to establish safety and security, something which can take years to achieve. The abused wife must be safe from her husband, the refugee must own legal citizenship in a new country, the accident victim must be healed and the situation resolved. Furthermore, the trauma sufferer must be able to function properly on a day-to-day basis before the memory can be integrated. It’s no wonder, then, that it has taken me so long to recover, as before I was sure of being able to function properly, I had leapt back into the middle of the circumstances that had made me sick.

I’d fallen ill because for three years I had been bringing my son up (he was born a month after I began my PhD) while writing my dissertation. Only of course in my second year of dissertation I’d started to teach, and by the third I was lecturing, and the summer before I fell ill I’d organised a conference. All this on very little childcare because we had very little money. Eighteen months after the illness, I was persuaded by my mentors to apply for the lectureship that I did indeed get. I wasn’t fully recovered, but when you want to be an academic, and you are offered a post at Cambridge, you do not turn it down. So here I was, a perfectionist workaholic still suffering from an illness I did not understand, and here was Cambridge University, a place with no limits when it comes to work. Inevitably, it was not long before I was completely exhausted again, but with a more than full-time job that was immensely important to me.

But I can’t ever regret those lecturing years. What kept me together, despite the crippling exhaustion, was sheer love of literature. I had a passion for my work, I loved my students, I adored research. It was my pride that meant no matter how ill I felt, I would never let one of those students down. I was determined to do as good a job for the last class of the day as I did for the first, and whilst this attitude was not conducive to healing, I look back on the work I did with satisfaction. It was an amazing experience, the very best and worst of times. I honestly don’t know how I did it.

But pride and willpower are pretty fierce motivators. I never breathed a word about my illness while I was working, partly because it seemed unprofessional to do so, but mostly because I was terribly ashamed. I did not realise until I began looking into trauma recovery how guilt and shame affect its victims. It felt to me that it was my fault I could not get well, just as it must have been my fault that I fell ill. I was somehow wrong, sub-standard, a faulty model. I had this gorgeous child, a lovely home, and an amazing job. How could I be so graceless and ungracious as not to enjoy every minute of them? I was a lucky person. Why was it so impossible to reconcile that with how I really felt on the quiet, wretched, exhausted, bitterly disappointed in myself, and frightened that I would not be able to carry on? I can’t tell you how humiliating it is to suffer from something that makes you feel so unwell whilst being invisible to others. How many times did I wish I’d broken a leg instead! I worked with words for a living; if I could not find the right ones to explain myself then the problem simply could not exist.

In the end I was forced to accept my limitations. I ran out of willpower to keep going. Finally I saw a doctor who said, we have to think in terms of chronic fatigue. I went cold all over, obliged to face it at last. I asked for a fortnight off work, and I didn’t go back for three years.

And now another four years have passed even since then, and finally – finally – I begin to understand why, just recently, a mild but persistent illness and the prospect of a public holiday without medical care readily available can still awaken violent, blind panic in me. There is enough structural similarity in that situation to trigger the trauma response, and then yes, it is weeks rather than days before my nervous system has returned to normal. Finally it makes sense. I’m not about to say, and now we all lived happily ever after. There will be a lot of work to do, separating ordinary illness from the traumatic experience, and integrating those years into the long term narrative. But this is the story of my life, in which one strange and terrifying event has dominated and altered it out of all recognition. On the minus side I feel cheated out of the ordinary confidence-building pleasure I could have taken from the things I did, but on the plus side, chronic fatigue has forced me to confront and sort out every single aspect of my life: my relationships, my work, my very sense of who I am. I have learned a great deal, even if it had to be at a great cost, but that’s pretty much true of all lives, I think. Wisdom never comes cheap.

46 thoughts on “The Last Piece of the Puzzle

  1. Yes, yes, yes. I am sure you are right about trauma. My story is different with the trauma happening as an adolescent and haunting me for years. And me successfully hiding it as you did. Then new crises, and the CFS took over. But as you describe, healing from trauma is more than having clear narrattive of what happened. “Normal” aging doesn’t offer much security. But the narrative is necessary.

    • MD, I am convinced that trauma is intrinsic in the majority of serious chronic illnesses that strike people young. I also think that hiding behind a false self is equally significant. There is SO little research done in this area, it makes me want to weep. But it’s a difficult territory, this area where mind and body meet, and hard to get medics to take it sufficiently seriously. But we know how important it is.

  2. This makes perfect sense. it really does.
    It’s the helplessness in a severe illness which is traumatizing.
    I hope this will help you to find a way to not go down the panic path again when you will be ill but I know how it is and the natural reaction at first is always “oh my God” I’m going to be ill for another … x years.
    But indeed, there is no reason why this should be like that.
    Btw I bought Judith Herman’s book.

    • Your comment helped, Caroline. When you pointed out that it was that fear that the illness would last forever again, it certainly started to trigger thoughts in my mind. I’m so glad that this makes sense to you, and I’ll be very interested to hear what you make of the Herman book. I’ve got the latest Peter Levine which is highly technical but looks full of interest.

  3. Oh your last line- ‘wisdom never comes cheap’- how very, very true! I always think that time & distance after the experience help build understanding…then suddenly everything is clear & I find myself looking foolishly at those wise people who told me the answers but I didn’t/couldn’t/wouldn’t listen…
    I value your candour (& the wonderful way you have with words) Lit Love.

    • Ms Thrifty, I can’t believe I have never thought about trauma in relation to cfs before. It seems SO obvious now, and surely it must have been mentioned in therapy and I’ve been over and over what happened in my mind. And then, suddenly, now, it makes sense. We can’t hear until we’re ready for it, I guess. Bless you for your lovely comment, my dear friend.

    • Lilian, there were so many times in the past I thought I would never find them all. It feels so much better to finally be getting a hold on all this.

  4. What Harriet said – this is such a brave post (and so wonderfully written), and I really hope that putting the pieces of the puzzle together will help you. Sending hugs and warm thoughts your way!

  5. Long time lurker, but I have to break cover and leave a comment. I can’t tell you how helpful this post is, and I am truly grateful for your courage in writing it. I’m recovering from a physical breakdown three years ago, not chronic fatigue but with some of the same symptoms. Totally traumatic, a lot of pain, much weakness. And yes, I do feel guilty and inadequate that it is taking so long to get my strength back, although I know I will get there eventually.

    I feel less alone in my recovery after reading this. I was nodding in identification all the way through. Thank you.

    • mm – thank you SO much for coming out of lurkerdom to make this wonderful comment. That really means a lot to me. And from one sufferer to another, I salute you and send all my warmest wishes for a steady recovery. It takes so much courage to keep going in that awful transition period on the way to health, and it’s fraught with mental and emotional challenges. You will get there – I was really worried at times that I wouldn’t make it, but health will come back in the end for both of us.

  6. No-one has worked harder at making sense of it than you, so I am so thrilled that the pieces are starting to fit together for you now. Rest easier, dear Litlove.

    • Oh bless you my dear friend. Believe me, when your health is the issue, you’ll do anything to fix it. Cross your fingers for me, hopefully I am on the right route now!

  7. Oh Litlove, how hard you’ve worked and how wonderful the last piece of the puzzle has fallen into place. I don’t expect things will suddenly be a walk in the park, but how relieved you must feel. Hugs to you for all you’ve done and all you have yet to do.

    • Dear Stefanie, I don’t know what I would have done without my dear blog friends like you and Charlotte and Emily and Lilian cheering me on. Big hugs back and thank yous, too.

  8. I wish I had some words of wisdom to add, but I don’t think I could improve upon your own words – very wise they are. Often we are harder on ourselves than we would ever be on someone else. Give yourself a big hug

  9. What a wise and amazing insight, so beautifully expressed. I wish this could be published more widely (I’m sure you have a lot of readers here, but still…) – it is so helpful, to me as I face my own, inexplicably difficult, recovery from long-term trauma and unhappiness, and I’m sure it would be to so many people.

    • Jean, you know, this is one post that I wish I could get further into the cfs community. I have never before read of it being linked to trauma, and yet thinking about it, it seems obvious to me that it must be a component part of such a long term illness. Recognising this really has helped me, and helped too to explain some of those truly inexplicably difficult parts of it. I think you are doing better than you realise – hang on in there. Peace of mind WILL come your way.

  10. I am so excited for you, that you’ve had this huge breakthrough of understanding … and also happy that you had it after you’d gotten what was good out of a painful situation. This is the thing, you know … we have these revelations when we’re ready to have them. Rarely could we have had them sooner, because we weren’t done with the situation yet. I hope this piece of the puzzle contributes to a picture with continued healing, and self-knowledge, and peace.

    • Dear David – you have been so helpful to me over this process with your insightful comments. You’re right that these things only happen in their own time. Here’s to feeling better and stronger for both of us.

  11. Looking at the completed puzzle is such an important step if only to show you your triggers. Knowing my triggers puts me back in control and while it doesn’t erase my anxieties, it does mitigate them somewhat.

    • Pburt, yes it’s those triggers that matter so much. I used to be really bad about ignoring mine and ending up in all sorts of trouble. It’s taken me forever to realise how important they are! Good luck to you, too, in your healing process.

  12. Like so many others commenting here, I have to say, ‘Yes, I understand, because I know.’ Every time I feel anywhere near well I take on something else that I’m enthusiastic about and within a year back we go to the beginning. I do think that ‘talking’ about it, in whatever form, really helps though. I have now found the strength to do that with the people around me who stop me when I’m about to push beyond my healthy boundaries. However, I’m no longer in paid work and all the things I get involved in are voluntary. Whether I could do that if I was still needing to make my way in the world of work, I don’t know. Keep talking about it, Litlove, and only ever put something else back into the mix permanently when you are sure it isn’t going to swing those scales the wrong way.

    • Alex, those are wise words indeed. I am dreadful about rushing back to too much as soon as possible, or if I avoid that particular black hole, to gradually overreaching myself over a period of time. There’s no chance of my returning to full time employment just yet, so at least that’s one thing I’m sure of! This blog has been such a fantastic way for me to meet people who understand what I’m going through – it’s a huge relief, I can tell you!

  13. Hurray! I”m delighted you’ve put the pieces of the puzzle together and made sense of it all. Should you ever feel those emotions again, they won’t seem quite as close and overwhelming now. This very hard won understanding opens up some space to steer a different course. May this be the foundation for a healthier, happier you.

    • Lokesh, you are so very kind. Thank you, dear friend, for your encouraging and supportive message. I think I see a little glimmer of space – cross your fingers for me.

  14. Great news – I am so pleased for you. I have no wisdom to add, especially given what others have already said, except to go gradually on your way. It’s all too easy to overdo it when things are moving in the right direction.

    • Dear Bookboxed, thank you dear friend for your lovely comment. Gradual is very very sensible! I am far too likely to charge off and overdo it.🙂

  15. Litlove, I’ve appreciated your openness and candid sharing of your situation. I wish you all the best in your journey of maintaining wellness, and finding meaning in your experience. Yes, literature can be a powerful healer. I look forward to your continual writing as you blog your way to health and wellness.😉

  16. I am writing this on my iPhone because my computer is on the fritz as you know. This is an amazing, meaningful post, and my heart goes out to you for all you have suffered. The fact that you struggled through teaching at Cambridge while you were dealing with sickness is a testament to your strength. Coming down with a chronic illness is not fair–as you are well aware–and it colors your view of the world and your life. I wish you all the best as you continue in your process of healing. I know all too well how hard it can be to heal from trauma.

    • Dear Ali, bless you for your kind words. You know just how it is. I’ve really struggled with the injustice of it – I tend to have a highly causal view of the universe and it’s hard to let go of that. And I don’t know how I got through the teaching years either! But I did. And I loved most of it – it was never less than an experience. Here’s hoping that there might be more career for me ahead, I would like that so.

    • Dear friend, thank you for your kind thoughts. We’ll actually have an online conversation one of these days! And very soon. Can’t wait to get back to our book discussion – have lots to say.

  17. This is probably Not the sort of learning experience you would have wished for–even if ultimately it makes you stronger. It must have been agonizing for you–almost as though you were living a double life–not wanting to unburdon your problems on others yet suffering in silence. Writing about it now must be hugely cathartic, but I can see where you would be anxious when you do feel unwell wondering if you’ll topple over the cliff again. At least now you are strong enough to confront it and can find a way to live with it (I’m guessing it’s not something that will ever entirely go away?). Lovely post on what had to be difficult to write.

    • It did feel like a double life, and I don’t know how people actually live them by choice because it is very awkward and uncomfortable! It’s funny, it felt like a good way to integrate that time finally into my ‘real’ life by writing about it here. I wasn’t sure I wanted to and hesitated for ages. But often I do feel better about things once I’ve written them down. It can feel like a way to say goodbye to them. I’m not sure if what remains of the illness and the trauma will ever really go away. I expect I’ll always have echoes. But I’m hoping that if I can get them to the state of being just ghostly echoes, I’ll be doing fine. It’s a real nuisance that it has to be around illness because when you’re ill you don’t get to say: okay that’s enough illness now, time to stop, so I get that out of control feeling too fast. But often I’ve found that once you realise a thing and see it for what it is, it begins to lose its hold over you. Well, I hope so!🙂 It’s been as ever really healing to have lovely comforting comments from my dear blog friends like you – that helps no end.

  18. As someone who also suffered from chronic fatigue I want to say that so much of what you wrote struck a chord. Work, although in many ways a drain on my energy, kept me going. Frustration arose because of the impact the illness had on my concentration and memory. I found it difficult to read and remembered nothing of what I did read. Strangely though, as I improved, I felt the need to go back to the books I read in my childhood. I hope for all of us, and especially for you, we find our own way out of this illness.

    • Oh I am so sorry to hear that you’ve been through this too. But I’m hopeful that your use of the past tense means that you are through the worst and at least coming out the other side. I stopped teaching when I finally realised that I couldn’t properly remember the books and what I wanted to say about them. When I realised I wasn’t going to do a good job as a teacher, I couldn’t bear that, so yes, like you that was a crux point for me. I like the idea of reading books from childhood again – it’s like recalibrating the instrument panel. Here’s to all of us cfs sufferers. May we get the better of it and sooner rather than later!

  19. Dear litlove, I am filled with admiration for you, both for your strength in soldiering on – I mean, really, teaching at Cambridge with ME and a PhD and a child, that’s awesome – and for your writing about it here. I wanted to cry for you when I read how you were ashamed of your illness and kept it secret. I’m also so sad to see how many people here also suffer from it.

    My partner has had CFS for the last ten years; he is unable to work and it is just such a grindingly depressing illness to have. I will print out your post so he can read it, I think your insights would help him, you have such an ability to articulate your experience and draw out implications from it. I wish you all the very best for your health and for continuing to resist the traps that panic can set, and I wish that too for everyone else here. Big hugs all round.

    • Dear Helen, oh I am SO sorry to hear about your partner. Poor him, and poor you. It is a dreadful strain to have to be the well person all the time, and to put up with someone who is constantly poorly. It’s no fun. If your partner ever wants to talk about cfs, or wants to hear some of the things that have helped me, give him my email: litlove1 at yahoo dot co dot uk. Solidarity is always good. And thank you for your lovely and sympathetic comment. The way I see it now, everyone has some sort of cross to bear, we all have to struggle against something. I had big compensations for my woes – a really fantastic job, and a loving family. So, I just have to plug away at getting over this illness. I’m much better than I was, really loads better. So there’s plenty of hope.🙂 And hugs help!

      • That is so sweet of you! I will tell him, but have to say he probably won’t take you up on it, he’s not really one for discussing it. But you never know… He has compensations too (me for one! :)) which is good, and he too is better than he was, which is also good.

        Hugs all round!

  20. I am so grateful for this post and can share that I completely understand that of which you speak. I have “been there, done that” as we say in the US. I had a very bad bout with medical issues last summer which resulted in quite a bit of anxiety for me and was probably precipitated by the same. It really can be a vicious cycle and one that I am learning a lot about and healing from. I’m so glad that you are willing to share as your words, experience, and insight mean so much to me as well as many others, I’m sure!

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