The ‘You Get Better or You Die’ Myth

Having failed to get an appointment with my ME/CFS friendly doctor I managed to get on her “ring me back” list yesterday to request a new sick note for work and a repeat amitriptyline prescription before she goes on annual leave.

Except she had a crazy day and forgot to ring me – so her super chirpy lovely colleague phoned me instead.

“Can I help instead?” she asked me and with a dread in my tummy I swallowed hard, knowing she could give me the functional things I need but perhaps not the understanding. I explained what I needed. 

“Would you like me to write on the sick note that you are gradually getting better?” she said.

“NO!  No I don’t”

“Oh.  So you don’t want me to put anything like that on the note?  It’s just some employers like to know you are getting better, getting gradually better.”

“But I’m not getting better.  I’m not better at all.  I mean my pain is better because of the medication but nothing has changed.  The fatigue …. The exhaustion … It’s still the same.”

After a little chat she remembered me – remembered seeing me back in June 2006 just before I got married.

“Oh god – you’ve had this for a long time haven’t you?”

Huh – like – yer.  Hello?  I have ME/CFS.  I am like, er, chronically ill.  I’ve accepted it – why haven’t you?

It ruffled me a little.  It reminded me of the “patient role” – you either get better or you die.

Doctors often struggle with chronically ill patients that don’t respond to treatment, don’t get better and don’t get worse.  In fact time and time again we read that the majority of CFS patients get better typically within the first year, or else within four years.  Yet there seems to be increasing evidence that sufferers achieve remission, not cure – and are often reluctant to continue or re-establish discussions with so many of our doctors who struggle in the first place with us not getting better and offer little to support the chronic sufferer.

“The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the “miracle” of modern medicine, and somehow the lack of recovery is often perceived as the patient’s fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, “Stop complaining. You simply must adjust.” Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word “adjust” too often means “resign,” “settle for less than a desirable existence,” and “surrender.” At its worst, “adjust” is just another way of saying “You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope.” All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.”

from Coping With Chronic Illness

Illness roles
People’s understanding of illness is based mostly on acute conditions. We understand a cold or a broken leg. People are either sick or healthy. The sick and healthy roles are well understood. Sick people complain, look ill, and remain inactive while they recover, which is usually within a few days or weeks. This is true for acute illnesses or pain. We also have an idea of what an invalid is. This is a person who needs to lie in bed being cared for long term. But what about the role of someone with a chronic condition that is not totally disabling? Someone who can go for walks, for example, and do some errands, but has limited capacity. This role is not so well defined in our culture.

Interestingly, there are some traditional cultures, where the person with a chronic condition (especially if they are mid life or older and female) is not expected to do anything or really function. They are put into the ‘invalid’ category and have trouble being allowed to do things that would be more functional.

People’s expectations
Based on the well-sick-invalid framework, you are allowed to be sick or limited for a while. After some months, people will be expecting you to be back to ‘normal’ – that is, a healthy, fully productive state. If you are not, but you look ok on the outside, there may be misunderstandings, rejection. Some people judge you as lazy, exaggerating, or accuse you of faking to get insurance benefits or attention. Or they expect too much of you, overestimating your current ability. Dealing with people’s misunderstanding and judgment, suspicions, and assumptions is painful. Having to justify your lack of productivity is an extra stress on top of having the actual condition.

from Coping With An Invisible Condition

I am really tired. Tired in the physical sense and so tired of defending the fact that I am still sick. There are so many things that make having CFIDS so awful…the pain, the fatigue, and, yes, the attitude. The attitude of doctors, the media, and even fellow patients has made the struggle even worse.

I got sick in 1987 and have never been able to return to work since. And unfortunately, I am worse. I have read so often how CFIDS patients are supposed to get better improve over time. I don’t mean to disappoint physicians and researchers, but I don’t think as many people fully recover as the uplifting newspaper articles and distorted statistics indicate.

I am not writing this to depress people. I feel guilty, as if I am not trying hard enough to get well. Every time I read about someone who just got better, I thing, “Why didn’t that happen to me?” Then I wait a year or so and call the so-called recovered person. And guess what? Their recovery was short-lived.

I think that somewhere in all the hope, the patients’ suffering has been forgotten. It must not be forgotten that many people are truly disabled and that many lives have been destroyed. Until the public image of the disease changes, then why should Congress allocate additional funding, and why should Social Security grant disability benefits for an illness the public believes will just go away by itself? “

Guilty Non-Recovery


7 Responses to “The ‘You Get Better or You Die’ Myth”

  1. 1 Rachel M July 10, 2007 at 1:43 pm

    *sigh* To be honest, I just don’t know what to do. I am too ill to stand up for myself to fight all the above misunderstandings and being treated as nuisance. And I am too sick and too scared to knock on doctor’s door since I moved here last December…

  2. 2 rachelcreative July 10, 2007 at 2:08 pm

    I’m sorry Rachel – I don’t mean to come across as negative. This post is born out of a personal sense of self belief and optimism.

    Please be assured the doctor I spoke to is very approachable, but unfamiliar with my case and not (seemingly) very up to speed with CFS/ME. The doctor I try to always see is very good indeed – she is knowledgable and sympathetic, supportive and willing to do what she is able to help.

    I was unlucky that even though I asked for a ring back with her specifically rather than risk seeing another doctor I ended up with another doctor anyway!

    I just wish there was no risk involved.

    But then my mum eventually paid privately and was diagnosed with a leaky heart valve causing terrible palpations after her doctor persisnently dismissed it as “stress”. So it’s not a problem exclusive to CFS/ME.

    I hope maybe there are local or regional CFS/ME groups near you who might be able to tip you off about sympathtic doctors in your area.

  3. 3 Rachel M July 10, 2007 at 2:18 pm

    Sorry Rachel, I didn’t read well enough. (My brain is very fatigued… I should be more careful when I leave comments…)

    I just wanted to say that your blog,opinion and thoughts are helping me in many ways.

    Cheers and thank you

  4. 4 rachelcreative July 10, 2007 at 4:17 pm

    I have to say – there’s a lot of words on the page! A sign my brain fog is not so bad these days 🙂

    Take care

  5. 5 Tammy July 11, 2007 at 3:47 pm

    I have been there many times – diagnosed in 1996 I had been asked about my personal relationships, my boyfriend or lack of one and told it was “in my head” for two years prior to that. I’ve had horrible years and some that were manageable but never a pain free day in probably 13 years – my brain has learned to shut away the pain for long periods of time through the day. That doesn’t mean everyone’s lives will be that way – I believe my diet and my physical activity plus my mental health ply key roles in how I feel. Everyone’s experience is different yet somehow the same.

    As for health care providers – if they see a diagnosis of fibromyalgia, CFS, MP or anything along those lines then it is best for them to ask – rate your pain, rate your headaches, how clear is your thinking, do you have other symptoms that get in the way of daily living because unless they ask – they will not know just how difficult it is for YOU to live your life with such chronic health problems.

    I’ve often thought the reason that some health care providers don’t ask all those questions, establish a baseline for each person is that these health care problems seem to strike women more than men AND women are often seen as exaggerating their symptoms.

    With fibromyalgia and other pain or fatique syndromes – we have a whole cascade of symptoms that are REAL.

    If someone discounts that and thinks maybe you aren’t “letting yourself get better” or that you could muster up more optimism about the whole thing – then it is very frustrating.

    The person you talked to on the telephone is right, most employers DO want to see that you are doing better.

    Most employees would love to be able to say “I’m gradually getting better.”

    Instead we live day to day.

    I am in healthcare myself. Many of the doctors and nurses I’ve worked with know just enough about it to get by but not how it impacts people’s lives unless they work closely with people that have it.

    Personally, I’m looking more into this diet and inflammation thing which fits well with the organic recommedations.

    You take care of yourself 🙂

  6. 6 Jacqueline L. Jones July 25, 2007 at 5:44 pm

    I’ve finally accepted that I will probably never get “well.” I have periods where I seem to be able to do anything I want, but I usually overdo it and wind up back in bed. I’ve learned to pace myself and build flexibility into my schedule.

    Diet, supplements, and exercise have helped tremendously, but they haven’t cured my condition as I believed they would. Getting better is enough. I couldn’t do much of anything before. Now I write, attend church, and help in limited ways around the apartment on a regular basis. Something is MUCH BETTER than nothing!

  7. 7 sioux January 30, 2012 at 10:57 pm

    relief to have found you all ..diagnosed myself 10yrs. ago with cfs..had been on dosolupein…depression!…have been in chronic pain hips, left side & for 21/2yrs…FINALLY diagnosed with fibro… osteo arthritis…cannot tolerate any meds,,fluoxitine,gabopentin,sertraline……living off flu tabs when hav to focus co-codamol when pain insane….but usually knock myself out with diazepam to sleep…no pain!…..looking up amitript to see how to tackle pain as nothing about pain on leaflet in box!…we just all gota keep goin….i know i do my best & know all you do…..KNOWING that helps the despair,humility & guilt….will be starting ami on low dose….5/6mgs sensitive! .& will give it a mth to get to 20mgs…see how i do…I have life in me 53yr old bones left yet & my saving grace is 2 understanding daughters & we send healing luv n hugs to you all ….& for hopeful answers for us all…sioux

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