Thursday, 21 July 2016

Chronic Illness & "determination to recover"

The press love recovery stories where the long time ill - through sheer determination and will power - make themselves well again.  

These stories run with patient comments such as, "I was determined not to let this beat me." or "It was a very difficult journey, but I triumphed in the end."  The statements themselves are likely true, but the press will often imply that the tenacity of the patient was the major key to recovery.

So what about all the people that remain chronically, and often severely, ill?  Are they simply not determined enough to elicit their own recoveries?

Of course I understand the need for journalists to make the subject of their stories heroic, and therefore remarkable, but there must be other ways of doing this than implying that strength of character and determination alone are sufficient to overcome serious illness?

Actually this line of thinking is not just insulting to the patients who remain ill, but also to the many doctors and researchers involved in bringing effective treatments to patients.  Often the fact that a new drug, or change in treatment, coincided with the turning point in the patient's attitude is down played, and the reader is left supposing that any illness can be over come with good mental fortitude.

The message is subtle and repetitive.  It is also incredibly damaging.

Those who live with intractable chronic illnesses are often regaled with these popular recovery messages by friends and family.  Well meaning folk get convinced that recovery would be just around the corner if only the sufferer would just "think more positively" and "believe that recovery was possible"!

Worse however, is the way this concept affects attitudes wherever a chronically ill person goes!

The cynical "if only you'd try harder" attitude now seems to be the official line for benefits assessments.  The ongoing problems with Employment Support Allowance (ESA) and Personal Independence Payments (PIP) assessments being particularly problematical.

And here the media has influence again.

This time by vilifying patients by "catching them out" doing something they should not be capable of doing according to the benefits they receive.  In these articles journalists can be especially cruel, often using a photo captured in a single moment as their evidence, ignoring the fact that one single moment may not represent the real truth.

Gradually public opinion of the long-term ill and disabled changes.  The chronically ill are now labelled as either heros, or layabouts.  

Media heroes have their praises sung high.  In these stories the heroic individuals either: use their strength of will to recover from their condition; or they have a visible disability, manage to achieve something outstanding, and are described as an "inspiration to all".

Unfortunately, those who remain long term ill without much hope of recovery, and especially those who don't have immediately obvious disabilities, don't get hero treatment in the media.  Sadly it is then assumed they must fall into the category of "layabout".

This dichotomy might not be as a direct consequence of all those media spun recovery stories, but they do have influence.

Recovery stories where the patient is the hero, might appear to be applauding the character of the now smiling recovered individual, but I can't help thinking that the flip side of these stories - the implication that anyone could recover if their character was simply stronger - is unacceptable.

I'd love to see mainstream media stories focus more on the treatments themselves, and on how lives can be changed by them, than on the personal attributes and positive thinking of an individual.

Journalists - if you are reading this please consider that these stories, written with the best of intentions, are actually contributing to a bigger narrative - one that puts blame on all the chronically ill folk that don't recover.  This can also lead to less public sympathy and greater difficulty in finding funding for proper research into medical treatments.

Many of us are determined to recover.  That determination is of course fantastic. It gives us strength  to see through difficult treatments, or to campaign for change. And I've no doubt some positive thinking can help with coping with a restricted lifestyle.  However, please, let's be realistic about the place of "determination" in effective healing.

Thank you.



16 comments:

  1. Sadly, you've nailed it. Now WE'RE at fault if we don't get better.

    Just as Ebola patients or AIDS patients were at fault because they couldn't just 'exercise and eat healthy' - with 'eat healthy' being whatever the commenter was pushing.

    Many times people CAN improve their lives by changing their bad choices into good ones. But what about people who are ill DESPITE their choices, good or bad?

    Journalists just want to see an end to a story, so they can then pronounce 'good' or 'bad' and be done with it.

    How nice for them. The rest of us have to deal with this thing called 'life.' Maybe you've heard of it?

    As I said, you nailed it.

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    1. Thanks Alicia. And you are right - journalists want neat story lines. Everything is black or white with them, but as we know "life" is not like that at all. xx

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  2. This really annoys me. I have multiple diagnoses that cause me pain, discomfort and distress. As it is I daily fight to be positive taking things one hour, one day at a time just to cope. I concentrate on what I can do and not what I cannot. I distract my mind as much as possible from the pain. I am told the pain is going to get worse as I age so I take the least amount of painkillers possible and it is not easy. There is no reprieve other than doing my best to refuse the pain to get to me. Being positive does not make anyone pain free it's just a way of coping with it. I would love to have just one ailment but I have many and just have to grin and bear it as best I can. I would hate for others to be in my situation or be a casualty of my pain so don't take it out on others. Life is too short and we just have to make the most of what we can when we can x

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    1. Indeed Denise. Journalists seem to fail to notice that you don't need to achieve miracles to be a positive and determined person. They seem to imply that recovery means you have these attributes and non-recovery (ie chronic illness) means you lack them... which is so VERY wrong as you rightly point out. xx

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  3. I think you are right regarding the media - always on the lookout for a nice neat story, even better to include a happy ending or positive achievement in it.
    I would say that if we were waiting for stories on treatments, we might be waiting a long time... or get even more annoyed if media parrot official lines: - CBT/GET recommended for ME/CFS/CFIDS if the do their research through 'medical journals' & 'official channels'. My 'CFS' turned out to be Lyme disease.... more and more evidence suggests combinations of different antibiotics are producing the best results - but the government (& sp the media) is attempting to discourage the use of abx as much as possible. Will we ever see articles that give accurate representation of the use of abx in confined farmed animals vs the tiny percentage of use in humans. Where are the big bad mutant bacteria actually coming from?

    And whatever happened to the story of people developing 'ME' being overachievers, type A personality-types. ... is the debate now that they go from overachiever to lazy layabouts overnight??

    As always, it just doesn't all add up.....

    Good blog ☺

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    1. Good comment. Thank you. Hopefully medical research will soon catch up, but as you say there are a lot of questions now about how the biopsychosocial theories just don't add up.

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  4. Nailed it! Thanks! I'll forward this to my brother who always has some snide remark to make like "just exercise" for my poor physical condition. Or "just make a list" for all the foods I react to. As if "just make a list" isn't obvious but over simplified to the point of absurdity. Or the advice on exercise or pacing as if this is novel to me and I don't already do this as my condition permits. And when I point this out he get's defensive and says "I'm just trying to help" Or "I would hope you would do this for me if I were in your position" The narrative always that this condition of mine is some type of choice I am making and his being the wiser smarter morally superior adult. If only I would humble myself and take his advice I would not suffer the way I do.

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    1. I hope it helps your brother to understand, although I think I can also appreciate where he is coming from in trying to make suggestions. It can't be easy watching a family member retreat from life. We know how important it is, but from the outside it must often look like a choice rather than a need. Wishing you both better times soon. :)

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  5. http://www.positivehealth.com/article/cfs-me/lost-in-translation-the-me-polio-connection-and-the-dangers-of-exercise

    In this article I explain why the most determined and strong-willed among us are most likely to end up severely ill. It's the polio connection and harm through exertion. The weak-willed and lazy ( like me) have the best chance of not getting worse...this disease punishes the virtuous and conscientious....

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  6. I think what you write here is so very important! I can tell you that when I was first diagnosed, I took on the attitude that I was going to beat my illness and continue living my life and not let it affect me. I can tell you that it was a very naive attitude to take and was akin to sticking my head in the sand and denying anything was wrong. Sadly for me, following a virus a couple of month after my fibro diagnosis, my health took a downward spiral. There was no amount of determination that could have prevented it. In fact, my desire "not to give in" just made me more sick until I got to the point where I was bed bound!!

    I think first and foremost people have to realise that progress is a privilege. I have made some good progress over the past 18 months following my crash but that's how I view it; I am lucky. I am privileged that I can look outside the NHS, I am privileged that I have people who can support me in doing so, I am privileged that I found things that have worked.

    I think people need to be careful of how they portray their recovery stories. So many I have read and felt like I have learned nothing helpful. That's not right in my opinion.

    Donna
    http://www.februarystars.co.uk

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  7. Dear Shelly,
    I love what you wrote. So much that it prompted my first public comment on the web ever. As a former CFS/ME sufferer I can attest that the only determination, willpower and perseverance came from my husband who literally put his life on hold to help me recover.
    In the end what made my recovery possible was simple, plain science combined with an incredible effort on my part to follow the protocols created by my husband. And yes I did go to see doctors but unfortunately in my case I almost died of the medications. It was a long journey to recovery and it took over 5 years. As for my attitude, well, I tried to stay as positive as I could but I often had long periods of pure struggle. It was so much suffering and pain that it is hard to even think of a “I will conquer this” mindset.
    I especially like what you wrote “I'd love to see mainstream media stories focus more on the treatments themselves, and on how lives can be changed by them, than on the personal attributes and positive thinking of an individual.”
    I couldn’t agree more. Focusing on the treatment is the very reason why I decided to publicly talk about it. Up until recently I was just happy I overcame CFS/ME and was trying to make up for the time I lost. It wasn’t until a friend of ours insisted we share our protocol and make it available to others that we gave it a thought. At first we didn’t want to do it at all. We were too afraid of liability issues, being criticized and so on. Then I realized that when I was sick I relied on other people’s blogs about CFS/ME and what they have done to cope to get through the day and it finally struck me – if by sharing what we did and making it available to others we can help one person it will all be worth it! Turns out most of my fears, including the one where I thought the protocol would only work on myself were unfounded.
    We have received such a downpour of love since starting on this journey that I can’t even begin to describe. The positive attitude will always help but CFS/ME is not just exhaustion, your body is out of balance and needs support from science to heal.
    If anyone is interested in learning more about our journey just follow the link below. I hope my story (and treatment!) can help others: http://immunizelabs.com/ourstory.html
    Love and Health!

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    1. I meant to write Sally not Shelly but couldn't correct it after I submitted the post. Apologies for the lapse!

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    2. Agree that "determination" can help in the context of being your own advocate and researching for things that might help.

      Happy that you found something to help you. xx

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  8. In complete agreement. I've formerly had cancer, and I despise terms like "survivor" or when people tell me I'm strong, I fought hard... I did nothing. I fought nothing, I am not a "fighter". There was no choice in my decision to have cancer and no influence from me on the success of the treatment. Nothing was my control. I sat on my ass, the doctors and nurses doing the work, and I was lucky the treatment succeeded. That was it -other peoples knowledge and some pure luck.

    I know people don't mean it in bad way but I feel the terms survivor, fighter, etc. takes away from those who were not so lucky, those who have died from cancer. As if they simply did not fight hard enough, and we all know this is simply not the case.

    It's the same with any illness though... Every time I hear someone say something silly like, "the only disability is a bad attitude" I want to scream at them, "oh yeah, well tell that to my legs!". Lol xxx

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    1. Well said. I don't much like that "only disability is a bad attitude" phrase either. And don't start me on the notion of us all being "fighters" and "warriors". As you say, good medical care and some luck, are often the keys to improving health, not mental attitude. xx

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