Saturday 7 July 2012

The Born-Again Sickie

Did you ever smoke? Do you still?

There can be little more frustrating than being cornered with no escape from a reformed smoker. They are more zealous, more smug and more judgemental.

Well, imagine having a condition for 29 years, trying everything from emu oil through homeopathy, flower remedies, yoga, meditation, diet, drugs, surgery, acupuncture, supplements, kombucha, and every well meant nonsense in between, just to stay as ill as the day you started.

It's a very, very, very long journey.

At some point you learn acceptance. You learn that this is your life for better or for worse, for richer or for poorer, in sickness and in health. You learn that, in fact it might be til death you do part.

Does this mean that you give up? Far from it. The hope that somehow, some day you will find that golden key, that elusive part of the jigsaw that will finally unlock the doors of your own personal prison burns bright, just as it always did.

It is the day you stop asking "Why me?" and simply answer that internal plea with "Why not?"

Does it mean that you became cynical and closed your mind off to new innovations? On the contrary, I believe in fact, that it is the day you found acceptance. The day you decided that you would live your life as it is, not as it ought to be. The day you stopped being angry.

You learn to take one day at a time and live each day in the moment. You learn to submit to what will be, always hoping, as anyone does, that tomorrow will hold miracles.

Well, if you do smoke and you've ever been cornered by that born-again-smoker, just imagine what it's like to be sick and find yourself cornered by a born-again-sickie.

This person will have the same condition as you. They will have had a fairly mild case of it. After one hiccup, immediate treatment and a full recovery, they will have gone into remission, their lives will have been transformed by this episode as most lives are. The difference is they will believe that they found the golden key.

They almost certainly didn't. They odds overwhelmingly suggest that they went into a spontaneous remission. Nonetheless, they will have shunned all conventional, modern day miracles, forgetting the surgery that almost certainly save them. They will believe that All Medicines Are Bad. They will almost certainly say the words "proven cure for cancer" at some point. 

Some are pseudo-scientific. They sit there, explaining how the the synapses or glands or cells can be stimulated into repairing themselves or reconnecting with themselves or generally behaving when soothed with some Amazonian tree-frog vomit combined with simple vinegar/honey/vitamins. The very little you do know about science makes you want to laugh out loud, but you sit and smile attempting an earnest, interested face.

If you are truly to go through the full zealout experience, they will tell you that you just did it wrong. They are certain you didn't try hard enough or stick to it faithfully or believe enough. You can't be meditating right if it didn't work. Somehow (they never say how) you are "blocking your own recovery." They unfailingly conclude immediately and certainly that "something is still troubling you" The fault is entirely yours. You are not as enlightened as them, not strong enough to do what they did.

Though the rictus smile stays painted on your face, you fantasise about shoving their born-again faces into the birthday trifle or wedding cake.

But at some point on this never-ending journey, you stop being angry. You realise that every last scrap of advice comes from a place of love. No-one bothers to waste their time on something they don't believe in. They have found their golden key and because they are good people, they want to pass it on. They want you to be well, they want you to feel the incredible new freedom they feel.

Sometimes it will be an acquaintance you met only once or twice, but they felt sad when they learnt how ill you were and read an article on your condition years later and sent it on to you. You've read it a hundred times before, but they don't know that.

Some will insist that you stop smoking/eating gluten/breathing/consuming dairy products/drinking. But they truly believe it will be healthy for you.

These friends and family, lovers and strangers have found their key. They just don't realise that no key opens every door. Golden or not.


  1. Sad but totally true...I often get the "but you're too young to have arthritis" line too. Frustrating and very, very unhelpful. Thanks for putting us spoonies' feelings into words once again Sue, you have such an amazing talent for saying what we are all thinking. xx

  2. So true lol!! A book called 'how to be sick' helped me with this a lot. It helps you to deal with the sickness and live with it. It is written from a buddhist perspective and all people get sick and die - even the most enlightened people get sick and die. The oldest person in the world is one hundred n odd. Nobody gets past that no matter how 'enlightened' they are. Therefore there is no golden key.

  3. This just reminds me of a bit of (relatively recent) personal history... not that I'm criticising you for that.

    The worst case is the people who say you should just ignore your problem, that positive thinking and just pretending you don't have a problem will see you through. That accepting a problem and trying to work around it, and live with it, is "giving in" and never good.

    I have great trouble dealing with such people.

    1. You have just described cognitive behaviour therapy. Just ignore all your symptoms, grit your teeth and act as if there's nothing wrong with you and everything will be wonderful...

      ..err.. no!

      I cope with my condition in my own way. Not great being agoraphobic and panicky but it's my problem and manageable so long as there aren't any external pressures and expectations. I cope by avoiding situations that trigger anxiety because that's the nature of the condition, but society, other people can't accept seeing you "trapped" in this way and bully you into doing things that make you ill. Yes I am pointing my finger firmly at certain ministers and the DWP, though in fairness, they don't care about getting you better, just working. Why should I be made to feel guilty for not being able to 'think myself well'? I'm so sick of hearing that it's down to having "the right attitude". *Fumes!!*

  4. I guess I'm lucky, life has always been like this. Hate to say it in these times but my Faith gets me through, it really does

  5. ooh so true!! For me it's also very easy to become that person when I've had a health improvement experience, irritating as I know it is to be on the receiving end.

    As a bendy it drives me to distraction when people who've had a bit of back pain or an unstable joint tell me that if I did a course of Tai Chi it would really help. Complete blankness when I try to politely say that if I had the energy and strength to get to a Tai Chi class I'd be laughing...

  6. You get this a lot with mental health too. Lost count of the number of times I've been told to meditate or "talk to myself differently". Some people just don't understand the concept of severity or of conditions being on a spectrum.

  7. I had a friend - note the past tense - who recently told me, in all seriousness, that I'd probably convinced my doctors I have a terminal heart condition, but don't really!


  8. I have MS and am sick of hearing I have ms but it doesn't have me, also being told its my attitude that's the problem. I didn't realise that attitude had nerves but the commentators certainly have

  9. There's a pic doing the rounds on twitter saying "The only disability is a bad attitude."

    First time I saw it I invented new swear words.


    1. It makes you want to say "live with my symptoms and then say that", but the people that come out with stuff like that will pretty much never listen.

    2. Think bendyleopard and I have met on the Guardian CiF pages, arguing with idiots who call all disabled people 'scroungers' and 'fakers'...especially people who suffer from back pain. I write back to tell them that unless and until they have found themselves so crippled with pain that they are literally unable to stand up straight, let alone walk unaided, they should shut up.....and one of the replies said - I kid you not - 'well surely you can always work as an accountant or a PA if you can't stand up'....

  10. oh, you forgot to mention Positive Thinking!! When all else fails, THAT is the magic cure-all. It's our own negative thoughts that are keeping us sick, if only we could step out of our pessimism our thoughts can make us well.

    While I agree that the way we think can certainly help us to cope better with the ordeals we have to go through, they alone do not cure us. I have tried!! I spent a year doing "affirmations" 3 times a day, every day. Feeding positivity into my psyche, infusing my whole being with good thoughts. 3,285 positive thoughts. I am still sick.

    But then, I've never really been a negative person, always try to see the best in every situation and every person - still didn't stop me getting sick, still hasn't cured my illness. But it does help me endure it...and the well meaning people we all know so well!

  11. Oh, not the negative thinking thing... there's a whole school of thought, supported by insurance giants, that claims that anything without an understood biomedical aetiology is due to, and everything else made worse by, "maladaptive behaviours"...


  12. Ive written a big response but others have said it better than me..

    all i can think to say is why in gods name would i have given up a £34K a year job where i was on the cusp of working at national level to barely manage to walk 60 bloody metres just so I can apply for DLA..who in thier right mind would..

  13. exactly Fibrogirl! Why would I give up a new career, my own house, relationship, dancing, gardening, hill walking, travelling, socialising and generally having a brilliant life to be housebound and isolated exhausted and in constant pain?!!!

    and Sam, I could think of a few maladapted behaviours I'd like to inflict on them!!

  14. I mean, yes I CHOSE to have arthritis, I CHOSE to have asthma, I;m sure with a bit of willpower and Positive Thinking I could stop my back hurting and run the London Marathon.....

    Oh yes, and of course no-one ever gets old....

  15. It is one thing when well meaning but ignorant friends try this but when it becomes government policy it is of a whole different order.

    For people with M.E. this attitude is ingrained within the medical system. Apparently, all you need is to admit you are actually depressed, have a maladaptive belief that you are ill, have a bit of CBT and take some exercise! People with very severe M.E are among the sickest people who actually still manage to live (although not always). Research shows that they are as sick as people with AIDS or cancer - in the 2 weeks before they die. Yet they can still be subjected to forced incarceration in mental hospitals or children can still be forcibly removed from their parents for "abuse" or Munchausens by proxy.

    This medical model, developed in the late 80's specifically to deny M.E patients health insurance payouts,(see UNUM) is the model which now underlies the Atos work test for everybody. It is the politicisation of illness for money and not to scare the public. Designating it a mental illness means Insurers can limit payouts to two years, instead of decades of 24 hour care.
    The abundant scientific evidence is there but try finding a doctor who has actually READ any of it.

    It is perhaps THE biggest health scandal of our times, waiting to be blown wide open.

    There is a DVD documentary "Voices from the Shadows" made by a patient's family. It needs to be broadcast on TV. Why isn't it? Anyone interested can see a short extract here. It features the mothers of Sophia Mirza and Lynn Gilderdale, well known cases, now both tragically dead- under the most appalling circumstances.

    This should be compulsory viewing for doctors, especially from Atos.

    1. Watched the trailer and I want to get the DVD. The question is Why is this not on TV???

    2. As someone who has had both m.e and depression I am always bemused by this attitude of doctors, my depression is as hideous and untreatable as my M.E was (it just sort of went into remission on its own I'm about 80-90% now) and the doctors have been as useless with both, as has the supposed wonder of CBT which I must have done about 4 times by now!
      Actually all the hideous treatment I got from doctors about my m.e as a teen is a HUGE underlying factor in my depression, oh the irony.

  16. Some years ago, I contacted the practitioners of a therapy that was to be the next big thing in ME "cures".

    The logic went like this - you paid them lots of money, they subjected you to various "therapies", but if you didn't feel any better it was your fault for not co-operating! I might add that they selected their clients with extreme care - assessed for suggestibility, I shouldn't wonder.

    Anyway, I emailed them, told them I'd had moderate to severe ME since the mid 80s,properly diagnosed by an expert in the field - both true - and that I was deeply cynical by nature. Also true.

    However, I felt that if their therapy was as good as they claimed, it should work whether I believed in it or not; I don't, after all, have to believe in the efficacy of Aspirin for it to cure my headache. How did they feel about giving it a shot?

    I was tersely invited to clear off.

    That was the Lightning Process.

    1. you need scientology



  17. I'm all for finding alternative methods to sorting out conditions - some of them even work (yes, I know, skeptics; but most skeptics I have met are miserable people so maybe being a skeptic isn't all it's cracked up to be). But man-oh-man, "advice" is only useful if someone with the same condition has actually found something which worked for them - and then starts a discussion with people who also have the condition about the pros and cons. Some alternatives do actually work - tumeric, for one. The issue about immune-boosters and eating beans a lot threw me for a while until I caught up with some folks with lupus who told me those two things would aggravate their conditions so I had to cut them out.

    I have had a tonne of people who do NOT have arthritis or fibromyalgia or lupus tell me all I need to do is lose weight and I'll feel better. I KNOW people with these conditions who are half my size. They are not better. In many cases, they're worse. But the stand-by diagnosis, from strangers, doctors, and "well-meaning" folk alike is I'm supposed to lose weight and I will feel better. Yeah, sure. Would love to - but apparently something has mashed my metabolism from the start. Of course it can't be that, it must be "willpower".

    1. Next time some well meaning idiot tells you that you would feel better if you lost weight, try telling them that the only thing that they can accurately judge from looking at a large person, is, the level of their own own prejudice (and ignorance)

  18. the worst case I have had of this was in hopsital recovering from the azathioprine trying to kill me (again), a nurse looked at me and said 'whats wrong with you then'
    while being slightly concerned that the nurse responsible for my care didn't have a clue what was wrong with me I responded with 'short or long tale?'
    'short' she replied
    'crohn's' I replied
    'oh that I had a case of that once a short course of tablets 15 years ago and I was cured' said the nurse looking smug
    'err there isn't a cure for crohn's' I replied
    ' yes there is' said the nurse while starting to look slightly peeved that I dared to question her knowledge.

    So I sat there on the bed thinking should I ask for this cure? or should i just smile nod my head and say good for you (I learnt early on in life don't upset the lovely nurses or even the nasty ones, your screwed if you do)
    I smiled at her nodded my head and said 'I'm glad it worked out for you'

    Another one is my own mother, she suffers from IBS so you think she'd have some understanding over crohn's, one of her favourite one liners is
    'you just goto the toilet a lot, why are you so sick?' another is
    'stop collasping there's nothing wrong with you' (highly amusing after the fact but not during while you have strangers helping you up and your own mother is just glaring at you and your trying not to cry)

    I find the best thing to have is a very warped sense of humour which seems to get even more warped with every passing comment on my health, 'why yes of course i will trying your cow dung treatment while dancing upside down and gargling a glass of water'
    'you know i never thought of trying that, god how stupid am I, it never occurred to me to simply wish it away.....'
    I'm also very sarcastic, good job I'm so loveable. Or so I've been told. (rambling ends here)

    love jayne aka wotme

  19. my answer to these zealot like creatures so well described is to shove them head first into a bucket of boiling concrete

  20. Mine's a funny tale, in that I was one of the people who thought I had found a 'Golden Key' when I had an unexpected remission that lasted for a couple of years, and I couldn't understand why other people affected with 'whatever's up with me' (no diagnosis, but M.E./Fibromyalgia/M.S. symptoms), couldn't be like me.

    I should have kept my mouth shut as 'whatever's up with me' came back with a vengeance and I had two massive deteriorations in my symptoms which caused me to have to give up work. Served me right for claiming I had found my 'golden key'!

    As for the attitudes of friends,family and especially doctors toward my illness, it's been hard like the experiences of others above. People will say 'well, you look good anyway' as if looking good has anything to do with the pain I'm in. Or when I say I'm exhausted or that I've fallen over again, people will say 'I know how you feel; I'm a bit tired and I tripped over myself the other day' when I'm talking about complete exhaustion such that even your automatic breathing function doesn't work, and falling over because your legs go dead. They claim that I can be cured if I just had a 'little rest', or they don't actually believe me when I say I'm ill. One person said 'yes, my mother has always been a bit of a hypochondriac too'!

    As for medical staff, I've had some terrible times, which I refer to in a specific blog post. The post concerned Cameron's 17 point plan for further welfare cuts; Number 9 suggested that anyone claiming E.S.A. would be 'required' to accept treatment in order to help their condition. It really scared me after my treatment a few years back at our local pain clinic; the thought of being forced to go back there again fills me with fear. You can read about this here:

    Yes, I used to get very angry inside about people who dismissed my illness as just being 'a little run down', or people who claim they have been completely cured, and that you could to, when in all reality they probably didn't have M.E./Fibromyalgia, just a bout of CFS (which is bad enough I know, but CFS is only one aspect of M.E./Fibromyagia as any sufferer will know).

    Nowadays, I don't let them get to me; I have nothing to prove, and I've learned that with some people you'll never get your point across, so I let it go the majority of the time.

    1. Cameron wants to make people accept treatment as a requirement to claiming ESA? Seriously?

      I wonder, if he has read the recent report from the LSE?

      How Mental Health Loses Out in the NHS

      Half of all ill health is mental illness but three quarters receive no treatment and just 13% of the NHS budget is spent on mental health. He might want to put the money where his mouth is before effectively accusing claimants not 'trying hard enough' to recover. Which clearly, makes us all very angry indeed. Effectively 'blackmailing' someone to sign away control of their own mind and body surely has to be a violation of the most basic human rights?

  21. Brian McAlorum8 July 2012 at 16:23

    Maybe, just maybe… through our tears and the veil of suffering there lies await: “Our Golden Key?”

    We all know what’s it’s like not to be able to stay asleep for maybe even an hour or so a night, or if we’re really lucky a couple of hours a night without waking from pain… from illness etc. – and for that illness, pain, exhaustion, limitation to carry over into our daily lives reality and primary experience. We all know this or similar!

    But maybe, just maybe… what we can learn from treading this bumpy path wouldn’t otherwise have been glimpsed or known, if it were not for the harshest and challenging of circumstances, and brutal deprivation of “normal” living? It is this “Golden Key” that I am pointing towards in this instance.

    As much as I am determined to remain open-minded with a moment-to-moment acceptance for a better way to live through my pain and health-condition with nearly 30 years of endurance – I cannot ignore the fact that the “treasures” it has shown me cannot be explained in worldly language, but has to be experienced by our willingness to turn around and look Pain and Fear in the face as a friend rather than a foe.

    On the instance I believe you may be referring to Sue, I hear stories of miracles and I am fascinated… In fact, just yesterday the local shop-keeper told me after 8 years of being tormented by pain – he cancelled his surgery because he healed himself, and the word he used was “miracle”.

    The wife of my pain association teacher having had MS for the 23 years they have been married, and unable to get out of her wheel-chair unaided – stood up by herself!

    I can’t dismiss the potential of the mind… of faith… of hope… and that the mind “alone” may not be capable of understanding this – therefore as much as I am able to, I am open and believe that anything is possible!

    If anyone has seen the film the Matrix, by the Wachowski brothers one of the great lines is: “You gotta let it all go Neo: Fear, Doubt and Disbelief”.

    Not easy ehh?

    Kind wishes to you all…

  22. Many zealots are unaware they may be suffering from Pollyanna Syndrome which is a mental illness would do no harm to be tested for it...

    1. we cheap nike cheap nba shoes air max would not again fall into their hands alive. Harry waded in and helped me ashore. cheap nba jersey I will repay you. When one finds itself unable to support the other, We were soon to receive an exemplification of at least a portion of the reputation that had preceded her.

  23. These self meaning folk are the same ones you see on tv who have money and try to make out that your wrong and there way is best and if you did this that or the other all would be well thank god i don't have any English friends that's all i can say my foreign friends would slap you round the face if i were to be belittled in their company

    No disrespect to anyone here but i had to reject all English people from my life years ago for these very reasons they just wouldn't give up on what's best for you sad but true and when your not well the last thing you need is someone making some sort of judgement or talking about you behind your back give me foreigners any day of the week

  24. Similar to the kind of people who gave me lots of self help books while I as seriously depressed and insisted that if I had read them properly and implemented their suggestions I would no longer be depressed. (I have a diagnosis of bipolar by the way).

  25. You write ' There can be little more frustrating than being cornered with no escape from a reformed smoker. They are more zealous, more smug and more judgemental.'

    I resent that generalisation, I am none of those things.

    I do however recognise some of the other things you talk about - even in the 4 short years I have been coming to terms with my own health problems, I have come across many of these well meaning people.

    These days I resort to smiling broadly, and saying yes - I am fine. Even when its bliddy obvious I am not.

    I admire your strength and tenacity, but please dont daub us all with the same brush. Ta :-)

  26. My fav quote yet, from my GP. " we"ll have to see about getting u off all these tablets" err, 2 prescribed by Cons psych, 2 for pain relief for Fibro & arthritis. The same GP also once said, we'll get your depression sorted out then all ur aches and pains will go. I said that would be a miracle as they were there before the depression. and I wasn't aware anti depressants cured osteo-arthritis. I think educating our GP's is the first step.

  27. I have Fibromyalgia and when I told my neighbour she said oh that's that thing no one believes in isn't it. I was sent to the pain clinic and she told me I just needed my head read. My GP is next to useless so I only go when I have to. If only I had known I just had to tell myself I wasn't sick!!!

  28. The phrase "the road to hell is paved with good intentions" comes to mind.I don't know who said it but they were spot on.

  29. Thank you for this post! Having had M.E (seemingly a trigger for a waft of well meaning daily mail articles about dubious charlatans charging ill people a fortune for a load of unproven crap being 'miracle cures') and now severe depression I seem to be a magnet for these idiot comments, especially 'positive thinking'.
    I am sick of being told that because I am realistic about my condition (severe depression which is know for the fact it can last for years or that you can be fine for a bit and then it all comes back again) that I am 'negative'. Though apparently 'delusional and unable to accept medical evidence' is a perfectly healthy state of mind...

    Barbara Ehrenreich has a fabulous book she wrote after having breast cancer and being annoyed by the fluffy positive pink brigade, 'Smile or Die' which examines the issue both in relation to chronic illness and in wider society, I love it and if I had the money I'd foist upon every well meaning 'I started jogging/drinking green tea/waving crystals about/some sort of shallow patchwork of spirituality I borrowed from religions I have no deep knowledge of but they have some statues of gods that look pretty' and it cured my depression' lot. amazon link for interest:

    I admit I am bitter and cynical but I think for the most part I have a reason to be!

  30. I guess I'm lucky, life has always been like this. Hate to say it in these times but my Faith gets me through, it really does