Chronic Fatigue Gets A New Name

So, The New York Times reports that the Institute of Medicine has suggested a new name for chronic fatigue syndrome. The proposal is that it should be called ‘systemic exertion intolerance disease’, which is quite a mouthful. But maybe an almost-unsayable name is appropriate for an almost-intolerable illness. Basically, the name is designed to reflect a significant symptom of the condition: ‘a sustained depletion of energy after minimal activity, called postexertional malaise.’

I used to describe the experience of the illness as akin to having a leaky car battery. You could charge and charge that battery, but as soon as you started doing anything you could feel the energy draining away. Quicker than seemed possible you’d be reaching the point of exhaustion. Sleep makes no difference. So during term at the university, I’d be struggling by about the second week in, watching my symptoms come earlier every day in the third, and running dangerously on empty from the fifth onwards, knowing I was just going to feel sicker and sicker and trying to manage the panic about that.

The harder you try to push through the fatigue and the illness and keep going, the worse it will all be when you finally stop. In fact the worse it is day in day out. I always thought that if it was only tiredness I felt, that really wouldn’t be a problem. The difficult part is that you feel extremely ill. There’ll be symptoms – nausea, headaches, general aches and pains, sore throats, dizziness, all that sort of thing – but the hard part to deal with is a kind of essence of all illness. You lose control of your temperature, your heart rate, your blood pressure. All of these experiences are invisible. The habitual words do not convey the reality of the feelings. No one will understand.

When I finally came off work, the suggestion from medics was that I try ‘pacing’. I began with no more than one hour’s activity a day, and would stick to that for a week. If all went well, then the following week I could increase my activity by five minutes. And again if all went well, five minutes more the week after that, and so on and so forth. There would be relapses. I remember several years ago, Mr Litlove and I were on a beginners’ tango course. This was a big ask for me – three hour sessions every weekend. Towards the end it was becoming too much and I intended to miss a session. My mother-in-law, who had been visiting, couldn’t understand it – I didn’t want to miss out, did I? If I was tired the next day I could just sleep in. Of course healthy people think this way. For me, I knew that completing the session would mean three days or so in bed, followed by a long, slow, increase of activity afterwards. And it’s hard to enjoy things when you are aware how expensive they are going to be.

I still think of energy as money. Some activities are a lot more expensive than others – for me, socialising, travel and stress are the most costly (this differs from person to person). But everything costs a little – being excited about something is as energetically demanding as being anxious. Laughing takes energy. Engaging in an intellectual activity doesn’t come cheap. Television is more expensive than a book. I have an expensive personality – my normal demeanour is bright, cheerful, engaged. Even being myself was more than I could afford some days, and of course the sense of outrage and unacceptability is so overwhelming when you cannot even behave like your own self that you (I) tend to push through regardless, out of frustration and stubbornness, and build up a large debt that then takes forever to repay.

Doctors have long wanted to push for depression as a key part of chronic fatigue, but I think that’s putting the cart before the horses. It’s hard to stay positive sometimes when you have an illness that is like a punishment for living. And inevitably, the sort of mindset you need to get better – calculating all the time what amount of exertion you can afford, always playing it safe, shying away from anything demanding – affects your confidence over time. Doing something new, or something you haven’t done in a while, can be frightening when you have no idea how you will feel afterwards.

I write about chronic fatigue for two reasons. The first is to raise consciousness, because it is still such a misunderstood and stigmatised condition. I’ve had a lot of time to think about it, and I’m motivated to find ways to express the reality of living with it. The second reason is that for a long time, I felt terribly ashamed of myself. I thought it was my fault. I didn’t want to confess to all the things I couldn’t do without severe consequences. I hated not being able to live like a normal person. But you know what? Denial is a very expensive habit, and I came to realise it was far better for me to accept the condition, to understand it was part of me, like it or not. And it still is a part of me. The past eighteen months have been a very stressful time for me and my family, and for most of it I kept up a reasonable level of activity. This was encouraging – I thought I was seeing the back of chronic fatigue. But then when things finally calmed down towards the middle of November, I felt the familiar old exhaustion. In December I caught every bug going, every time I tried to raise my level of activity even a little. I resigned myself to more of the same in January. This month, I’ve felt more like myself, but I have to calculate my energy every day and make decisions accordingly (hence minimal blogging for which I apologise).

But even the experiences that take the most away, do give something valuable back despite themselves. If there’s one thing this condition has taught me, it is the resilience of the human spirit. Since 1997 I’ve been on a wild cycle of ups and downs, but no matter how low I have been brought, I have always risen back to the surface. There has always been a return of energy, a renewal of appetite, an improvement in my overall wellbeing. And each time that happens, I have felt acutely, exquisitely, how precious life is. I live a very quiet, peaceful life, but living quietly and peacefully with much time for contemplation turns out to be something I cherish and for which I am profoundly grateful. Not many people have the luxurious time and space that I do for observation and for thought. The blessings only come from accepting the truth of the situation, and that can be hard with a condition that is so poorly understood. In the absence of a cure, perhaps a new name (however awkward!) will help the healthy and the sick understand what’s at stake, and deal with it better.

 

 

49 thoughts on “Chronic Fatigue Gets A New Name

  1. What a long, tough journey it’s been. I am sorry for the pain and the illness you have had, but if it has resulted in your learning to love and appreciate your life of contemplation then perhaps that is a good thing. I know it has been nothing but a pleasure following your beautiful blog these many years. Your thoughtfulness in writing and expressing yourself is unusual in these days of busyness and 140 character commentary.

    • Hear, hear!

      Litlove, I am really glad and grateful you’ve written about CFS as it has genuinely helped educate me about it. I fear I might otherwise have been one of those dismissive, impatient types… I’m sure you know the ones I mean, and I am appalled to think what harm I might have done in my ignorance. Thanks for helping me understand how desperately debilitating it is for you, Jess and others.

  2. I’m sure you will have helped many people by writing so openly and honestly about CFS, Victoria. Some of your experience chimes with my own – I have MS at the mild end of the scale and exhaustion along with a variety of other weird but not necessarily wonderful symptoms has dogged me for well over 25 years now. Even the most well-meaning friends find it hard to understand. I once had an attack of desperate itching when a friend was visiting. She kindly suggested calamine lotion to which I replied that it might work if I could unscrew the top of my head, and pour the lotion over my brain. I think my life is very different from what it might have been – that said I agree absolutely with your final paragraph. Having a loving, supportive partner helps tremendously, too. I do hope that you’ll come through your recent relapse, and apologies for leaving such a long comment. You touched a chord.

    • Susan, you may write as long a comment as you like! As far as I understand it, our illnesses do have some similar features and biological origins, and of course originally MS was considered a psychological illness. How wrong can you get? You are so right that having a supportive partner makes an enormous difference. It’s people who have to suffer such illnesses with no one to help or look out for them in bad patches who have my unlimited sympathy. I don’t even know how you’d begin to deal with that. As for your itching story – heh, yes! I really DO understand, both the symptom and the well-meant response. If only it were that simple.

  3. I think you’re enormously brave Victoria, not only in dealing with your condition but in writing about it so lucidly. It must be so hard having to cope with something that so many people are skeptical about. I hope things continue to go well for you.

    • Heh, yes, more fun has been had elsewhere, I daresay! The skepticism is probably the toughest thing. It’s bad enough to feel ill, but the definition of insult to injury to be told you’re imagining it. But the New York Times piece does at least state that doctors believe there is a physical basis to it now, and that’s progress. I think we should teach the definition of ‘psychosomatic’ in schools as well, just to clear things up a bit.

    • I have had CFS since I was 29 – I just turned 55 – And now that it is finally being accepted as a real illness – I feel angry at all the people who rolled their eyes – Yes kaggsy – coping with skeptics is truly hard – and it’s terrible to have your pain be the source for so many jokes. Victoria’s post was extremely comforting for me – especially since I am in the worst flare I’ve had in 20 years. I really liked your response – thoughtful and kind.

  4. This is a brave, honest and – for me, with no experience of CFS (or, perhaps, now, SEID) – it’s such a help to know what it’s like from the inside because people rarely say (I expect it’s far too exhausting) or, unlike you, they haven’t the gift of literate, articulate and heartfelt description. Thank you.
    PS So often you write wonderful replies to our comments but I, for one, hope you never feel obliged to, especially if doing so depletes your energy.

    • Angela, bless you for such a lovely comment. I’m going to reply to comments on this post as they come in and I’ll definitely catch up slowly with the ones I’ve missed. I love the dialogue with my blogging friends and never want to miss out on it, but it’s especially kind and understanding to be given the space to take my time over it!

  5. I saw that article yesterday and wondered what you would think of it! It seems the medical establishment is taking the whole thing more seriously which is a good thing. The name, however, does not roll off the tongue very easily and it doesn’t even turn into a decent acronym. I am glad to hear you are feeling more yourself these days and I hope that lasts for a long time!

    • It’s particularly good for Americans who have to deal with the whole medical insurance malarky. At least I have had understanding doctors who were willing to let me have time off for it! You are so right that the acronym is not great – though I fear for what we might end up with, if medics become creative! And thank you for the well wishes – I really am a great deal better on the whole, and even if ill, can manage much easier than I used to.

    • The only redeeming quality of the new name is that it labels it as a disease rather than a syndrome – it not only does not roll off the tongue but boils it down to one symptom, which is a great injustice to the people who suffer from it.

    • Heh, yes, that’s certainly much easier to say! A cfs-suffering friend and I decided we might call it ‘Extreme General Crapness’. I am sorry to hear about your family, though, I don’t know that I ever knew that. I send much solidarity!

      • They would thank you. My brother found pot worked, my step mom found vitamins, comedies, and tiny bites of food; my cousin is still working on it, but she’s got nerve damage from a horrible assaul; one aunt drank a lot; one’s schizophrenic and doesn’t know what day it is really; and on and on. My friends exercise and stretch, ditch carbs, and manage their time better. Some moved to warmer climates; some still believe their docs have a clue, and stay on the tricyclics roller coaster. The only consistent thing I have found about Fibro and CF is that every person feels it different. There’s no, one remedy.

        Keep researching, keep asking your body what it needs. To hell with what anyone else wants. I wish you as much comfort as you can get!🙂

  6. Names are powerful, so re-naming is usually a sign that more people are considering what goes into a thing. Seems like a good sign. I don’t know anyone but you with this condition, so I appreciate knowing more about it from your posts.

    • It is a good sign – chronic fatigue has long been derided as a name because it sounds like such a feeble and unimportant condition, not the experience of those who have to live with it! Which is of course exactly the point you are making – the name does make a big difference. The desire to rename does indicate a readiness to take the condition seriously, and for that I’m very grateful.

  7. Awkward though the name might be, I like that the medical community is now taking CFS seriously enough to try to give it a name that better identifies what it’s like. Many of my life-limiting symptoms overlap with CFS, which is one of the reasons why I simply can’t imagine living in the same house with anyone…I don’t want to have to explain it. Even in Portland, the alternative health capital of the world, where everyone has some allergen they’re avoiding, and every third person is self-diagnosed with some metabolic or immune malfunction…even here, people are judgmental and don’t understand the concept of energy as money…that if I have spent energy on seeing a client, chances are I’ll be bankrupt when you want to have dinner with me on Friday. It is very hard not to feel unworthy and ashamed when healthy people don’t ever, ever have to think in these terms. Perhaps the one grace that comes with handling these sorts of issues is the opportunity it gives for observation of the human condition…not just one’s own, but…watching from the sidelines, it’s amazing what one sees.

    • “Perhaps the one grace that comes with handling these sorts of issues is the opportunity it gives for observation of the human condition…not just one’s own, but…watching from the sidelines, it’s amazing what one sees.”
      Quite so. The human condition = “There is value in understanding, but don’t ever expect to be understood.”
      I had fluctuating chronic fatigue-like symptoms for several years – by the sounds of it not as incapacitating as yours or litlove’s, but I really didn’t “feel myself”, and unlike when I was younger, exertion didn’t revitalise me but merely drained me. My doctor told me peremptorily that I was either “tired” or “depressed”. That was nonsense because I’d been both those things, and this was something different. The tiredness always came in the wake of a cold, so it was clearly physiological. Sometimes it lasted a few weeks, other times it lasted months. But if other people can’t feel it, they assume that the problem is somehow “behavioural” (retch).

    • David, I completely agree. It is galling to watch healthy people go about their busy business and know that is not an option for me, but sitting on the sidelines (which is a great phrase) has unexpected benefits. Now I spend a lot of time wondering whether/ to what extent people are aware of themselves – it’s a perplexing question and one I don’t tire of. If I could ever find enough energy to get there (and survive jet lag), it sounds like Portland is quite a good place to be, though!

      Frank, I’m sorry to hear you’ve had to suffer some degree of chronic fatigue. It is utterly tiresome when doctors put very ordinary words on what one feels and then believe the ordinary definition no matter what one says. It’s notoriously difficult to remember how pain feels when not in the middle of it, but that’s no reason to negate anyone’s experience.

  8. I love your ‘even being myself was more than I could afford some days’. Although not suffering with this horrid illness can identify with that sentiment – public face and all that.

    I’m interested in the Lloyd Jones memoir you have in the right sidebar – think I told you before I went ti uni with him and his brother was/is a bit of a colourful character!

    • Oh yes, Mrs C. The public face is so much more important than a person ever imagines. As for the Lloyd Jones, ach, I have put it to one side for the moment as I think I was not in the right place for it. I’m a fan of his and I thought this memoir – linking the earthquake in Christchurch to his family history – sounded perfect. Maybe part of the problem is that he wants to use the earthquake as both catalyst for telling his story, and analogy for the uprising of hidden material from the past, and so it’s a little confused at times. Plus he has a lot of lyrical passages that are also opaque and I don’t do well with lyricism. But it so ought to work that I’m convinced the fault lies with me. I’m putting it away and bringing it out in a month or so to try again. Hopefully I’ll click with it next time.

  9. Wonderful post I can barely face reading, so painful! You describe how it is so clearly, minutely. I still despise my malaise and have jolly supportive very well intentioned family suggesting just a bit more every day, you’ll get there and then acting as if of course it’s straightforward – oh it becomes simpler & easier to avoid the so very draining conversations. It’s a frightening condition and I’ve fought long against the diagnosis. I have an underlying so far unfathomable anaemia and thyroxine problem draining me too. I’ve chosen not to go a party today but stay with my reading, knitting and special blog reading. Feel a mess and a failure often, can’t take care of a beloved ailing very close relative because of it, that IS shame making even though I have no choice. BUT I send all love, support, appreciation and gratitude to you.

    • Carol, it IS frightening and I, too, didn’t want to hear the diagnosis when it finally came. It’s a horrible illness that puts you wrong with even the simplest and most natural parts of your life. So no wonder you feel bad about it and struggle with it – that is SO right and understandable. Eventually my husband suggested I shouldn’t think about it – not conceptualise it, if you see what I mean – but just deal appropriately with whatever I was feeling on a day to day basis. The more sympathy you can bring to your own suffering, the better (I have found). It takes a lot of time and peacefulness to start getting the better of it, so do give as much of that to yourself freely and without shame if you possibly can. It’s not your fault you have this, so allow yourself the permission I bet you’d readily give to anyone else to take time and heal. Look after yourself!

  10. It’s wonderful that you are so open about your condition so that other sufferers can feel they are not alone but also so that those of us who have no experience beyond passing references in the media can understand. I had no idea until reading your post what a debilitating condition this is. To have to measure out every activity in terms of how much energy it consumes and then exchange one pleasure for another must be horrendous.

    • Karen, thank you for being so understanding. I think from the outside it can look like a sort of paradise to sit around not able to do much; but when you’re actually stuck with it, feeling too ill to do any of the things that would give you pleasure, it’s fairly awful. There have been a few books written by CFS sufferers (or whatever we should call ourselves now) but nothing that has had any widespread effect. I actually feel better when I find the words to describe it – at least then I can own it, and oddly enough that has its satisfactions.

  11. Such a wonderful, heartfelt piece. I’ve been living your disease with you for nearly nine years (can you believe it??) now and I’ve watched you from afar, often feeling sorry for you (sorry! I know you don’t want pity, but my empathetic nature can’t help it sometimes), but far more often, admiring your resilient nature, strength, and ability to fight. You’re a true “poster child” for [whatever anyone thinks is the appropriate name for the condition today], and I wouldn’t hesitate to send any newly-diagnosed person I know your way.

    • Emily, this is such a lovely comment – thank you! I know, how can nine years possibly have gone past? And us not a day older?😉 Please do send anyone newly diagnosed my way – I take pleasure in extending solidarity. And I’m so sorry I haven’t been visiting much lately. I do hope to do a lot better in the near future.

  12. I am always delighted to read you on CFS because my partner has it and I fear I am not always very supportive; a post from you refreshes the sympathetic part of me wonderfully, and shows me the world through his eyes rather more clearly. Still, my ‘delight’ is tempered by the knowledge that you are writing about it because you suffer from it too, and that’s horrible. I’m sorry that you’ve had such a bad time of it recently, and I do hope you continue to improve. Big hugs to you!

    And big hugs to you too, Carol S, I was sad to read that you feel ashamed and a failure.

    • Helen, I always think of your partner, too, as I count the rosary beads on my chain of CFS sufferers. I do hope he’s doing okay; it’s a pig of an illness. Though I do always remind myself that there are many worse ones out there and on the whole, this can be made bearable. I’ll bet you are supportive, really. It makes me a whole lot better to know the world is carrying on around me in a normal way, and you always make me laugh so in your posts and comments, I can’t imagine how you could be anything other than a wonderful tonic!

    • HI Helen – for me shame has always been a part of it – and lately as I get older – failure – so seeing Carol S. express that made me feel better in an odd way – bad for her – but validated

  13. Gentle hugs for you. I haven’t stopped by in awhile (shame on me) but I count you as one of my top favorite book bloggers and I wish for you ever expanding less expensive energy sources. With sunshine and flowers, Care

    • Care, it is SO lovely to have you visit – and really never mind how often or not. I’m just very happy to have you stop by. I’ve been dreadful about blog visiting lately, just too much to get done, so I perfectly understand. Thank you for your lovely comment and I send big hugs to you!

    • I can’t imagine you being anything but sympathetic! But it is a hard condition to understand, not least because of its invisibility, and it’s taken me forever to get my own head around it and have some overview of what’s going on. And I have it! Thank you for the lovely comment; makes figuring it out all worthwhile.

  14. Reblogged this on Embracing Adult ADHD and commented:
    This eloquently and clearly depicts what it is like to have this illness – I could not have written anything that closely describes this roller coaster ride. So thankful that I found this blog. I thought I’d share it with my readers so they can understand the health crisis I am dealing with at the moment.

  15. You found the words that have eluded me for years. It is just perfect – can’t thank you enough – I just want to print it out and hand it to people when they roll their eyes. I was diagnosed in 1989
    I am in the worst flare since then at the moment – I am doing the AIP diet – taking supplements, resting non stop, and still some days there is no energy to even just be me – as you said.Thank you, thank you – I am so frustrated and sad – this helped so much. Feel good!!

    • Thank you SO much, Addhope, for your wonderful comments. It makes running the blog worthwhile to think that you have found some help and support here. As it happens, I would have replied to you sooner, only I’ve been in a horrible flare-up myself, one that has affected my eyes with a disease that can cause blindness, so that’s lovely isn’t it? I feel more bullied than ever by my symptoms. But what can we do? Just keep counting the energy supplies and giving ourselves as much rest and kindness as we possibly can. I send hugs and healing thoughts to you – take the very best care of yourself.

      • Eyes affected – how scary. Mine take time to focus on a bad day but a disease, oh dear, not fair, not fair. I’m sending you all possible healing thoughts, seriously.
        I’ve reread this entire post almost a year on, (my anaemia remains unfathomable, my thyroid function fluctuates, the description of energylessness remains very recognisable and continues for me with long lasting and deep dips especially after a cold or flu) The hugs sent my way are very much appreciated, thank you Addhope and Helen but I do find them tricky to ‘let in’ to believe it’s ok to be so useless, it’s not is it? I think of the Victorian matrons stuck on their sofas, of the Proust aunt/grandmother(?) who remains in bed all day. I use to believe they were repressing anger at woman’s condition but I’ve had opportunity, I’ve worked full time for years, bought up 3 children, published a magazine etc etc The shame I feel is a massive ongoing daily battle. Best when I look at the smaller picture and don’t go global – but. Confused.com

      • I am SO sorry to hear that. If you ever need a ventee – I am here – I have recently heard of a Dr in Alabama who deals with it from a viral perspective – he is highly respected – My friend went and said his fatigue has improved 50% The Dr’s name is Pridgen – he is a sugeon but somehow stumbled upon the fact that combining antivirals with RA meds made them work more effectively.
        I hope you feel better soon. Hugs and love !!!❤

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