The Naive Patient

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The Naive Patient
By Jody Smith​

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About 10 years ago I began looking online for information and answers about my mystery illness. At that time, my sleeping and waking hours were upside down. I would sleep most of the day and be up throughout the night till dawn. I spent many disturbing hours online looking for answers.

Back then, most of what I could find was pessimistic at best, terrifying at worst. Implications of heart disease and brain damage, irreversible hormonal disruption, malfunctions of the heretofore unheard of hypothalamic-pituitary-adrenal axis, and plenty more that I could not translate into language I could understand.

Confusion and growing despair

Most of what I found was written in such complex medical jargon that I couldn't tell what I was reading. I suspected that there might have been answers if only I could comprehend what I was reading.

But with no background in science or medicine, no knowledge of most of the terminology, and passing all this falteringly through a riddled ME/CFS brain, I would end up so exhausted and so depressed that stumbling off to bed was the only recourse for temporary relief.

Perhaps the only exception to the jumble of facts and conjecture came on the site of Phoenix Rising, written by Cort Johnson, with his smiling face on each article. His online presence was reassuring, but unfortunately he could not tell me what was wrong with me or what to do about it.

I continued plowing through all the material I could find for some months despite the heaviness this search burdened my already taxed mind, body and emotions with. Eventually I decided to give up a seemingly lost cause, as I reached a conclusion which I now realize to have been spectacularly naive.

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I remember at one point laughing at myself, saying to my mother, "Who do I think I am, Sherlock Holmes? What makes me think I am going to come up with answers? I have no background or training. I don't know what I'm looking for. I mean, if there is an answer out there, my doctor will be the one to tell me."

My mom didn't know anymore about it than I did, and so she agreed that asking my doctor would indeed make sense.

Innocence waiting to be crushed

I had great faith in my family doctor back then. I hung on to this trust stubbornly, in the face of growing indications that he was not there for me.

We'd had a congenial relationship for about a decade before I got sick. He was in the avant garde of young doctors I thought, when our relationship first began. I didn't go to his office very often in the years before I became this ill, but I was always comfortable with him. I felt like he was on my side.

All that changed with ME/CFS. It was a gradual change, so gradual that at first I thought I was imagining things ... being too sensitive, too paranoid. But eventually there was no denying the complete reversal that had taken place.

Seven years ago, I came to see him, thinking I was having a stroke. He smirked and told me I wasn't. Then he took my blood pressure which was dangerously high, uncharacteristic of me, and the smirk disappeared. He sent me to the hospital for tests immediately.

He sent me for some blood tests and some other tests, which I'll give him points for, but when they all came back "normal" he had no suggestions. I guess I was lucky that if I asked for a referral to this specialist or that one, he always sent me.

But he made it clear that he knew nothing about this mystery condition, or where I might find possible treatment; and he was not going to try to learn about it. He was not going to help me.

He asked me one day if there were any things that helped my symptoms. I told him about the only thing that at that time made any difference. I said, "Going to bed."

He said, "Well, do that then."

I did not say, but felt this reaction strongly — "I am not going to spend the rest of my life in bed!"

My passion reaction, of course, had no basis in reality at that time. Every indication was that I would indeed spend the rest of my life in bed. The fact that my doctor was perfectly fine with that really stuck in my craw.

Some good treatment but it was a very mixed bag

The neurologists and the ophthalmologist that I asked for referrals to, treated me well. Though all they could do was perform tests whose results showed that I was right as rain.

One neurologist really touched me when he said that he wanted me to understand that just because he couldn't find anything did not necessarily mean that nothing was wrong. He said that this often happened, because the study of the brain was a relatively new science and they didn't know enough about it yet.

He also offered the interesting reassurance that the fact that since this thing was already of a long duration, it was probably not going to kill me, because if it were going to it probably would have by now.

I was actually comforted by this statement. And comforted by this response from one human being to another, so different from what I'd become used to from my own doctor.

I made an appointment with my family doctor after I'd gotten a letter requiring my participation in jury duty. I was completely crashed at that time.

Just going to my GP was enough to leave me wrung out and bedridden for days afterwards. It would have been impossible for me to drive the hour into the city and sit in a court room all day, even once. Who knew what kind of self-destruction would be awaiting me if I tried?

I took the letter in to my doctor, to get his official endorsement that I be released from this Herculean task.

This man who I thought knew me, knew the kind of person I was, knew the ordeal I was grappling with, looked at me with an unfriendly stare, and said, "And what possible reason is there that you can't do jury duty?"

I stared back. I said, "Well, for starters, I can't stay out of bed all day!"

Silence. I could see him back down a little. Saw the aggressive attitude ease just a bit. Saw his mind register — "Oh, right. This is her."

No apology for being rude. He did explain himself a bit, saying he'd had a number of relatively able-bodied people that morning waving similar letters, trying to shirk their duty. Like he had just implied I was doing.

This, incidentally, is when I got my "official" diagnosis of ME/CFS. Not because he'd been intensively doing the work, but because he had to write something on the form about jury duty, he had to name my condition. I suggested ME/CFS and he wrote it down.

After our tete-a-tete about jury duty, I never went to see him again. And when he retired a few years later, I was grimly delighted to hear he was gone, and this meant I could see the new doctor who would be taking his place.

I have been in once to meet the new guy, and he seemed like he was alright. He did not scoff, and he was honest about the fact that he didn't know if he could help me. He was also glad - perhaps relieved - to hear that I was seeing a naturopath who had been helping me to make progress.

My old doctor had been quite put out that I had been seeing a naturopath, and said in a sulky tone that "they use drugs too you know."

I didn't bother engaging with him about this, I no longer cared what he thought. I just took a deep breath, put a smile on my face and said, "She has been making me better."

Surprisingly he looked a bit abashed at that, and said, "Well ... we don't know everything."

I thought but did not say, "You're not kidding!"

For the most part, I have turned my back on conventional medicine. If I were to be in an accident or need surgery or some other urgent intervention, I'd go to a GP. But my experience over the last decade and then some has been that for anything chronic, I would be wasting my time.

What has your experience been with the conventional medical community?

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DB

Sounds very like what works for me, with the addition of some supplements. Acupuncture and chiropractic have been amazing for me.

Acupuncture is my "energy medicine," and yes I take lots of supps as well.

The thing I still haven't figured is SLEEEEP. Oh how I would love some of that.

 

Acupuncture is my "energy medicine," and yes I take lots of supps as well.

The thing I still haven't figured is SLEEEEP. Oh how I would love some of that.

Tried Rescue Remedy, valerian or melatonin?

 

Jody All of the above, along with about 70 other herbs, supps, and weird brain gadgets, all with little or no benefit. The best I get at this point is 6 hours of interrupted and poor sleep. I know if I could get more, my life would change dramatically.

 

Jody All of the above, along with about 70 other herbs, supps, and weird brain gadgets, all with little or no benefit. The best I get at this point is 6 hours of interrupted and poor sleep. I know if I could get more, my life would change dramatically.

Nuts. That's all the ideas I've got.

 

As you know, Jody, I have been lucky enough to have 'normal' everyday health conditions which show up on tests, so I have faired far better than most people with chronic pain, fatigue & other miscellaneous debilitating symptoms.

But one thing that hasn't been resolved is my lack of deep restorative sleep (despite 8-9 'sleep' hours each night).

Unable to type or do much last week with my broken arm in plaster, I stayed off the computer 99% and you would not believe how well I slept for 3-4 nights. Even my high blood sugar with my recently diagnosed Diabetes II was almost normal (despite poor diet & little exercise over the winter months with flu & then an ongoing ankle prob).

In my particular case, lack of deep restful restorative sleep seems to coincide with high blood sugar.

I might suggest that EVERYONE with a sleep problem (who has cut out caffeine and any other stimulant) tries staying off the computer for one whole week (not even email or blogging) and seeing if the over-stimulated mind calms down.

Everyone is unique and responds to different treatments, but in my case, I still believe 'sleep' and 'stress' are my biggest problems. Diet (whatever works for you), exercise (slow walking in fresh, unpolluted air), keeping the body well-hydrated and getting enough deep sleep are paramount as starting blocks to resolving some chronic health issues. (notice I said 'some', not 'all').

People tell me they can't sleep, but when I see them on the internet spending lengthy hours researching, scrolling through lengthy articles and having lengthy conversations on forums, I can't quite believe they haven't tried staying off the computer (tv etc) - I mean literally, not turning the computer on at all.

I am also very lucky in having a supportive GP (who believes me and follows up every request or test I ask for, even though he, personally, can't offer much help).

 

I've seen a lot of clueless practitioners, some arrogant, and a couple neurologists that would qualify as "rude and cruel". I completely agree that the standard medical system is unable to handle a chronic disease which is not well understood. If you've got type I diabetes - no problem. Broken limb - easy.

But a patient with something complicated and chronic is generally abandoned as soon as possible. My GP is good at taking new symptoms seriously and referring me to specialists, but none of the specialists know what to do with ME, and there's no way she can handle it in 10 minute appointment blocks. She's also rather relieved that I see a Naturopathic Doctor in another country to try to manage my issues, though it gets complicated in the Netherlands because she's limited in what she should be prescribing without a (local) specialist getting involved.

The health system really needs to change to accommodate chronic illnesses without easy answers. There should be someone in the regular system who we can go to for symptom management.

i couldnt agree more. ive came across many doctors who when they know im looking for information about my disease they jump into conclusion judge me a psychosomatic and making up my own disease because of it. they like patient who doesnt know anything at all who just nods their heads and do, take whatever they told to.
like i would suffer myself more to look for medical information that i have no clue and not appealing to me at all if its not because they dont help me when body is crying for help. how i wish i shouldnt have to stress myself more looking for help. id rather do something else thats more interesting if i could get help from them, i swear.

 

"This man who I thought knew me, knew the kind of person I was, knew the ordeal I was grappling with, looked at me with an unfriendly stare, and said, “And what possible reason is there that you can’t do jury duty?” "

I think I must of been seeing your doctors brother, I had a dr who had exactly the same attitude, sadly I had him for 2-3 years and was fooled by him all that time as I kept telling myself that it was me probably being paranoid ,each time I started to think this dr had something against ME/CFS. (He'd so often cancel my appointments on me which I'd book 6 weeks in advance but came up with reasons but he did that so much that I started to wonder).

Then one day I went in very upset as I'd had a severe collapse while trying to get home from his visit quite recently before. No taxis were available in my local town for several hours this day, so I'd had to attempt to walk the very short distance home but couldnt make it. Was staggering up the road then looking drunk, trying to stay on my feet and about to faint and desperately needing to get home fast due to about to pass out (and it was cold and about to rain). I ended up collapsed in the gutter, ringing random businesses in the town close by, begging ANYONE (all these strangers) to come and get me to take me home, horrific nightmarish experience.

Anyway.. I was telling this dr about what had happened and his reply (which came out more like an order) "You arent disabled!!" This was even thou I'd been on a disability pension for several years and was seeing several CFS specialists. Turned out this shockening doctor wasnt even even telling me about my CFS specialists recommendations whenever they contacted him on what they wanted him doing with me (so he left me thinking I'd been abandoned by them too).

"I told him about the only thing that at that time made any difference: I said, “Going to bed.” He said, “Well, do that then.”

I did not say, but felt this reaction strongly – “I am not going to spend the rest of my life in bed!” My passion, of course, stood upon no basis in reality at that time. Every indication was that I would indeed spend the rest of my life in bed.

The fact that my doctor was perfectly fine with that really stuck in my craw."

Nods.. that truely sucks. I was doing that too and then cause I then wasnt complaining about so many symptoms due to doing nothing at all, one of my CFS specialists somehow came to the conclusion that I'd recovered!!! My activity level thou was something like only 5% of normal.

Another thing which happened is my CFS specialist wasnt listening to me. I told him for years I had orthostatic hypertension but he never took my BP while standing. Then one day he suddenly did it (i'd given up mentioning it by that time) and to his shock he saw my BP go up to 170 with 1 min of standing. He goes something like "oh this is what is wrong with you". I could only stand there is horror as I'd been telling him this was going on all along and he obviously didnt remember me going on about this so many times before in his clinic.

Other doctors have abandoned me, telling me they do not want to see me again as my case is too complex (one did that after ringing an ambulance one time on seeing me, not believing my very obvious symptoms were ME/CFS).

Ive had too many bad doctors experiences to tell. I went throu over 30 GPs (usually with just seeing one once) before I found one truely interested in me thou even she said I had to be under a CFS specialist too (which left other in my town who had been looking for a GP longer then I had for this illness unable to go to her either as this other didnt have a CFS specialist which fortunately I did).

In my own case Naturopathy hasnt at all helped (no luck for me with any herbal meds thou I've tried a heck of a lot). I got sick while studying to be a Naturopath myself, The first year of my illness with me getting sicker and sicker, was spent with me seeing naturopaths to no avail. Prescription meds have helped some of my symptoms (thank God for those) and also treating my MTHFR polymorphism and my insulin issues which GPs who specialise in this areas have done.

 

How curious Victoria I was lately thinking if spending 4 or more hours on average in the Internet daily had something to do with my unrefreshing sleep. Because I was in the past being much more time on the Internet, I know how it leaves you -really wired. This is especially easy to notice if you have been all the freaking day in, at night it feels like you have drank a bit of coffee at least for me. You say nothing of computer? What about going in a couple of times per week, only 2 hours or so each, and in the morning? I need my informatiooonnn I am cutting my hours of computer everyday and will soon add the blue-blocker glasses.

Although I think my unrefreshing, fragmented sleep has more to do with methylation (serotonin, melatonin), adrenals, thyroid (have tests proving it actually) etc but less computer will be good no doubt.

 

Beyond "i need my information" lol exactly my thought too. well unless if i already find the oasis that ive been yearning for. its not only computer though but cellphone..
to me if someone (including myself) really sleepy (means the hormone, nerve doing their jobs right) eventhough youre doing something youre gonna end up drop it and fall asleep anyway cause it will drag you down. (also from fact and experience from people) but if youre not eventhough youre just staring at the ceiling still cant and even when youre asleep its easy to get awaken also the unrefreshing sleep, etc.
but i agree that we need to help induce it by relaxation stay away from things that makes you fall asleep harder, etc.
taniaaust1 most of the doctors ive met was jerks lol. only some that i could say decent but still not good
lucky though for people who find the cooperative ones, i still wish i could too

 

He also offered the interesting reassurance that the fact that since this thing was already of a long duration, it was probably not going to kill me, because if it were going to it probably would have by now.

'Interesting', indeed!

So if it had been heart disease...?

I did a quick search for how quickly various chronic illnesses kill, as I know that it can take well over a decade for many, and didn't find any clear statements on this in the time I had, but this Australian page gives useful stats.

Great article, by the way. I do hope that some doctors read these pages. The more they realise that we prefer honesty and humility to pomposity and 'reassurance' the better.

 

As I have written in other threads my experience with conventional doctors has been consistently traumatic and disappointing. Alternative healers have been only dissapointing. However, one week ago I met a young neurologist that listened to me, was quite empathic and didnt hesitate to send me a sleep study. Someone reassonable at last! He seemed very ignorant though, but at least he could see I needed help which most of other more wordy and technical doctors werent able to. With these it was like I had to convince them to make me tests or even that I had something. And yeah! Dont mention that you are informed and proactive and you seek for a solution "online" instead of sitting and awaiting for degeneration! Because that triggers a program inside most of them which dumps you into the hypochondriac basket.

Kiseki I agree, no way that using the computer/other screen is the real cause behind our basic sleep dysfunction. Hormones and things like that are at the root of that. When you are sleepy at the day and wired at night or if you wake up three times per night or you dont get restful sleep it cannot be blamed to the computer entirely. But using "the screens" too much is very bad IMO. I once had an online chatting friend and he always told me at midnight that he was getting his eyes droppy and had to go to bed. He said that he couldnt understand how I was still awake and chatting like during the day or more. This guy used the computer maybe 10 hours a day?! That is a very basic and important difference between someone with normal melatonin metabolism/normal cyrcadian rhythm and what not and someone that doesnt feel sleepy at night.

 

I was shocked to learn that alternative medical professionals are better equipped
to deal with chronic illnesses. My family is still pro traditional medicine
and anti holistic so I came by my naivete naturally. The animosity between some of
these professionals is unprofessional and unfair to patients.

Don't confuse 'traditional medicine' with 'conventional medicine'.

The former means the kinds of medicine which were dominant before modern, drug-and-surgery-based 'conventional medicine' took over. It includes things like herbal medicine and acupuncture, i.e. fields that have come to be known (often rather dismissively and arrogantly) as 'alternative' or 'complementary'. Alternative to what? Complementary to what? These terms contain an assumption that the first choice should be drugs or surgery, and that the more natural treatments might just help a little.

I reject all these terms except 'traditional', and I suspect that they may have been introduced and/or popularised by those with a vested interest, e.g. pharmaceutical companies. The use of language can be very powerful in promoting a particular agenda.

So for 'conventional medicine' I prefer 'modern medicine' or sometimes 'pharmaceutical' or 'artificial' medicine, and for 'alternative' or 'complementary' I use 'natural'. 'Holistic' is good too!

 

Great article, Jody. I often think there should be a book for new patients with all the issues - medical, political, advocacy, etc. - that they need to know about.

Have you seen this one for the medical aspects? Not perfect, but the best I have seen.

To save people clicking if they already have it, it's Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica Verrillo.

 

Dont mention that you are informed and proactive and you seek for a solution "online" instead of sitting and awaiting for degeneration! Because that triggers a program inside most of them which dumps you into the hypochondriac basket.

I like the way that you put this! Most doctors I have seen have been like this, but my current one does seem to respect the fact that I am scientifically qualified (more than most doctors, in fact).

I found that one of my doctors had written in my notes that I had 'some internet knowledge' about my condition. Does the fact that I read a scientific paper on the internet rather than on paper make it less reliable?!

Even highly-qualified scientists can find themselves reduced to a childlike state by a visit to a doctor, as this excellent article illustrates.

 

So for 'conventional medicine' I prefer 'modern medicine' or sometimes 'pharmaceutical' or 'artificial' medicine, and for 'alternative' or 'complementary' I use 'natural'. 'Holistic' is good too!

I wouldn't use the tern artificial or natural as they have emotional connotations which muddy the water. Certainly pharmaceutical and holistic are better wording but I'm not sure i agree with the opinions of many people here, shunning the modern medical profession.

The trouble here is that there is no understood cause of disease pathology in ME/CFS therefore the modern medical profession should not have any treatment recommendation as they have no idea of what is at the root of the disease. I suspect doctors as a group however don't like to admit they do not know and instead we get lumped with ''treatments'' such as GET and CBT which quite frankly don't have the evidence to support them that drugs would have to receive before administration - I suspect this is likely people thinking they can't do any harm when it appears they in fact do in the ME group. More than anything I feel doctors don't want to have nothing to offer and these treatments appear harmless enough until a better alternative is discovered. From a personal view I make my doctor appointments more of a two way conversation, if they start talking rubbish i'll no doubt try to tell them it's ok that they don't know.

I'm not sure i'd say the holistic approach has anything better to offer other than a person who appears more understanding of a patients situation. In the future, once the disease pathology is better understood, I suspect the majority will return to modern medicine and the new treatments it will provide.

 

I didn't mean to say all holistic practitioners were better than conventional or
traditional or whatever you chose to call it.


Like most people I see good and bad in both areas. My statement was a reflection of
my attitude at the moment. I got swept up in the emotional aspect of this article.

As long as we're taking about being naive, what's with the condescending attitudes
from most medical professionals ? It's as if they're members of the mean girl
clique. I know thus isn't based on intelligence because I've worked with more
intelligent people who aren't like that. Is this holier than tho attitude the
reason they decided to get into medicine ? Or do these people have the need to be in control

 

Talking about why a good chunk of allopathic doctors are so assholish IMO is a blend of the type of people that get inside that studies/work field AND the brainwash they receive during it PLUS how people treat them as god-like oracles during their years working. Pick me as an example. I have a scientific mindset and would love to study to heal myself and others but knowing what I know about allopathy is not likely that would work out me studying in one of their universities controlled by the big pharmaceutical companies. They do not go to the root of the diseases and ignore the already published information about the real causes of a lot of things they claim are "not curable" and with "unknown cause" Plus a lot of their meds may supress one symptom but they create others. And dont get me started on vaccines...

 

Talking about why a good chunk of allopathic doctors are so assholish IMO is a blend of the type of people that get inside that studies/work field AND the brainwash they receive during it PLUS how people treat them as god-like oracles during their years working. Pick me as an example. I have a scientific mindset and would love to study to heal myself and others but knowing what I know about allopathy is not likely that would work out me studying in one of their universities controlled by the big pharmaceutical companies. They do not go to the root of the diseases and ignore the already published information about the real causes of a lot of things they claim are "not curable" and with "unknown cause" Plus a lot of their meds may supress one symptom but they create others. And dont get me started on vaccines...

Medical science teaching can tend to be reductionist, preferring to single out individual molecules rather than looking at the effect of, say, a food. In one of my Masters-level papers I wanted to look at the effect of a particular food in relation to a type of cancer, but the tutors would not allow me to. So I had to decide on one of the chemicals in the food instead. I was not happy about that, as evidence in living humans for beneficial effects of the whole food was stronger than the evidence for individual components of it. As well as a reductionist insistence on looking at individual chemicals as candidate drugs, the testing and development of the chemicals/drugs is also reductionist, first screening in silico (using computer technology), then in vitro, then in small animals, then in larger animals, and only after all that do they look at the effects in humans - and often have to abandon the candidate drug then because it is ineffective or unsafe.

It is largely due to the fact that research is profit-driven. If we find from epidemiology that cabbage reduces the risk of something by 50%, who will profit from the discovery...?

This kind of emphasis will be sure to influence those who go on to practise medicine.

 

I wouldn't use the tern artificial or natural as they have emotional connotations which muddy the water. Certainly pharmaceutical and holistic are better wording but I'm not sure i agree with the opinions of many people here, shunning the modern medical profession.

I don't agree with your take on those words. I am a stickler for accuracy, and 'natural' and 'artificial' (or 'synthetic') are simple, literal words. If people have an inappropriate interpretation of the words, then I think the solution is to use the words correctly as much as possible.

As I said, 'complementary', 'alternative' and 'conventional' in relation to medicine are inherently value-laden, intended to convey a message. It's a similar situation with 'alternative energy', which has been replaced to a considerable extent with the more-accurate 'renewable energy'. Those dismissive of natural medicine might find it harder to argue against it coherently and effectively if they had to use that term. 'Holistic' might not include some single natural therapies which have very specific effects and known mechanisms of action.

And of course some types of natural medicine are used in 'conventional' settings, e.g. dieticians and physiotherapists.

From a personal view I make my doctor appointments more of a two way conversation, if they start talking rubbish i'll no doubt try to tell them it's ok that they don't know.

Maybe the problem that many of us face is that many doctors - including female ones - are more respectful of males than of females. Try as we might to make a consultation two-way, it takes two to tango, and if the doctor has a patronising view of women that will prevent him from listening to us. That is the impression I have frequently gained.

 

Yep, there is also the fact that both the individual docs and the companies that give them free holidays and such for selling their drugs are more profit-driven than helping-the-sick-driven.