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The Naive Patient

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The Naive Patient
By Jody Smith


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.
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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Doctors have been completely useless. One even asked me how come I'm the only person in the world to have these symptoms, even thought I've told him few appointments earlier that I fit ME ICC perfectly.

I must admit that no doctor has been outright cruel or rude. Just clueless and a bit arrogant.

I've been ill for 4 years and I had a million tests done, but I still fear that I missed something. Should I have done endoscopy? Was tilt table test done properly, or should I repeat it? Should I see yet another doctor?

But all that takes energy and money I don't have.

I read Phoenix Rising and medical papers as much as my concentration and poor knowledge of medicine will allow me. But I am still petrified that I have missed something and if I had only seen it I would be able to get out of bed.
 
Thanks for this Jody. I think the saddest part of this is how generally universal your story is. I will have been ill 11 years this November. For the first 8 years I was treated appallingly and lied to by neurologists- telling me there was nothing really wrong and it would all go away - who would even contradict the findings of other neuros in the same team rather than accept something was up.

My GP is one of the good guys. Thank God I found him.
Once we discussed death and he asked me if I was afraid this would kill me.
"God no!" I responded, perhaps with more feeling than was safe, "It would be done with then. No, what scares me is the thought this thing could put me in bed and I wouldn't be able to get out. THAT truly terrifies me."
He accepted this with surprising understanding.
I am not relieved by the idea this won't kill me. When my son took me to the cardio last week he admitted that he and the other two adult kids think I'll die and they are worried about this. I begged him not to be.
"I can't do another ten years of this," I told him. "Don't wish it on me."
He understands. I know he, his lovely wife and my other two adult kids will be there for the younger three; and I have prayed to make it through the home education until my youngest can learn independently.
But ye gods Jody I don't' want to live another ten or worse still a full lifetime, like this.

These days when I look around the net for info I too often find "oh it'll be ok" attitudes or "it's not that bad." YES it IS that bad. NO it isn't OK. My husband read out the bit in the NHS Fibro leaflet where it says fibro is fine and won't disable you. There I was in my wheelchair in the hospital. LOL!
I admire everyone here who survives each day with this disease.
 
Doctors have been completely useless. One even asked me how come I'm the only person in the world to have these symptoms, even thought I've told him few appointments earlier that I fit ME ICC perfectly.

I must admit that no doctor has been outright cruel or rude. Just clueless and a bit arrogant.

I've been ill for 4 years and I had a million tests done, but I still fear that I missed something. Should I have done endoscopy? Was tilt table test done properly, or should I repeat it? Should I see yet another doctor?

But all that takes energy and money I don't have.

I read Phoenix Rising and medical papers as much as my concentration and poor knowledge of medicine will allow me. But I am still petrified that I have missed something and if I had only seen it I would be able to get out of bed.


Tally,

I know the feeling. I used to be haunted by that feeling. I have been fortunate to have been getting progressively healthier these last few years and now mostly am able to have a sort of low-level/normal life. The pressing panic of trying to find out what took my life away has been tempered by this. But I do remember clearly what that was like. Not knowing where to turn, so few people interested enough to try to help me in any way ... Reading page after page of incomprehensible scientific jargon, so obviously NOT written for someone like me. Who knew whether there was something in some of those pages that might help me? Reading page upon page of terrifying apocalyptic scenarios based on ... nothing, and the other extreme, drivel that told me I was really overreacting and if I would just take this pill or follow that regimen, why ... I'd realize I was actually fine.

The information out there these days is less than satisfactory, but it is better than it was even a decade ago. It is easier to find, and there are now support groups (like this one here:)) that weren't here not so long ago. Hang in there Tally. Better things may yet be coming.
 
Thanks for this Jody. I think the saddest part of this is how generally universal your story is. I will have been ill 11 years this November. For the first 8 years I was treated appallingly and lied to by neurologists- telling me there was nothing really wrong and it would all go away - who would even contradict the findings of other neuros in the same team rather than accept something was up.

My GP is one of the good guys. Thank God I found him.
Once we discussed death and he asked me if I was afraid this would kill me.
"God no!" I responded, perhaps with more feeling than was safe, "It would be done with then. No, what scares me is the thought this thing could put me in bed and I wouldn't be able to get out. THAT truly terrifies me."
He accepted this with surprising understanding.
I am not relieved by the idea this won't kill me. When my son took me to the cardio last week he admitted that he and the other two adult kids think I'll die and they are worried about this. I begged him not to be.
"I can't do another ten years of this," I told him. "Don't wish it on me."
He understands. I know he, his lovely wife and my other two adult kids will be there for the younger three; and I have prayed to make it through the home education until my youngest can learn independently.
But ye gods Jody I don't' want to live another ten or worse still a full lifetime, like this.

These days when I look around the net for info I too often find "oh it'll be ok" attitudes or "it's not that bad." YES it IS that bad. NO it isn't OK. My husband read out the bit in the NHS Fibro leaflet where it says fibro is fine and won't disable you. There I was in my wheelchair in the hospital. LOL!
I admire everyone here who survives each day with this disease.


Shell

It is sad indeed how common my story is. Seems to be more the norm and it shouldn't be. And I can totally understand how you feel. But perhaps what is ahead won't be more of the same. Perhaps there will be some improvement, some new piece of information, some headway, that will make life more bearable.

Only five years ago, it was all I could do to hang in there and force myself through the (limited) motions each day. Felt horrific when I woke up, felt horrific all day long, felt horrific when I went to bed. Saw no possible change in my future. Saw no resources, no opportunities, no healing, no way to take care of myself beyond being able to dress and feed myself -- and I couldn't even do that for months on end when the joint and muscle pain and inflammation was bad.

I wish I could tell you something better is ahead for you. I can say that while there's life there is hope. If anyone had tried to tell me what things were going to change for me back then five years ago I really would have tuned them out as being pointless and irritating. So I will understand if you do that.:) But even though I didn't think anything decent could ever happen to me again, ... some decent things have happened and made life better. I am hoping for this to happen to you.
 
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 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.

I see an integrative doctor, both md and holistic, so I can take advantage of
the best from both worlds. It's still not been an easy road tho with all the
rabbit holes that even doctors can get caught up in.

Thankfully, one of
my ex gps started me on the food intolerance pathway in 2005 so most of
my severe cognitive problems were gone quickly. Then I could at least try to
nderstand what i read online. Most of my info came from DAN (defeat autism
now). Imho, that was easier than taking on the cfs jungle.

great article Jody. It's sad that so many of us can relate but you summed it
up well. tc .. x
 
Good article - it's always hard for doctors to see patients with diseases they don't understand which is likely why most shun those of us with ME/CFS, certainly if the roles were reversed i'd like to think i'd try to be more understanding but I can see the awkward situation it puts doctors in. The best doctors are those who openly admit they don't understand it but offer their personal opinions and advice - neuropaths do this day in and day out which is likely why at this point they seem the most helpful for ME patients. Hopefully with more research conventional medicine can find some answers and provide some conventional healthcare options for us.
 
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.


Valentijn

What I've seen has me convinced that if you need quick intervention, after an accident, or you need your appendix out or something, conventional medicine wins hands down. But it has no idea about what to do with chronic conditions. I would no longer allow a "regular" doctor to treat me. I would no longer be willing to try any of their drugs. If I break a bone, or need a transfusion, fine. But I will get my health broken by a chronic condition restored elsewhere. My naturopath and chiropractor have done wonders for me.
 
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.

I see an integrative doctor, both md and holistic, so I can take advantage of
the best from both worlds. It's still not been an easy road tho with all the
rabbit holes that even doctors can get caught up in.

Thankfully, one of
my ex gps started me on the food intolerance pathway in 2005 so most of
my severe cognitive problems were gone quickly. Then I could at least try to
nderstand what i read online. Most of my info came from DAN (defeat autism
now). Imho, that was easier than taking on the cfs jungle.

great article Jody. It's sad that so many of us can relate but you summed it
up well. tc .. x



Thanks xchocolholic

It seems to me to be the way it is. For a chronic condition seek alternative medicine. There are some conventional doctors out there who seem to have a grip on some of the things that work for us but they are a little unconventional anyway.:)
 
Good article - it's always hard for doctors to see patients with diseases they don't understand which is likely why most shun those of us with ME/CFS, certainly if the roles were reversed i'd like to think i'd try to be more understanding but I can see the awkward situation it puts doctors in. The best doctors are those who openly admit they don't understand it but offer their personal opinions and advice - neuropaths do this day in and day out which is likely why at this point they seem the most helpful for ME patients. Hopefully with more research conventional medicine can find some answers and provide some conventional healthcare options for us.


Legendrew,

I agree. I understand that we don't make their day. I've had some specialists that were highly decent, they scratched their heads and told me they didn't know the answers for me. They talked to me like I was a human being going through something scary. These were decent men.

The others were people I would not have wanted to know in my personal life.
 
I have had too many horrible experiences with docs to write about. One that I will never forget was an endocrinologist I was seeing at University of Penn. My hormones were so whacked out. I had high testesterone and DHEA. She said to me, "I see nothing wrong with you. So you have high DHEA. So what? That doesn't make you sick. I am one of the best endocrinologists, as stated in TOP DOCS of Philly. If I can't find something wrong with you, nothing is wrong with you." I was 23 years old. I am now 43. The very next week I went to a regular GYN who looked at my blood work and said, "Okay, this is easy...you have Polycystic Ovarian Syndrome. PCOS." He then did a vaginal ultrasound to prove it. The other doc wrote in my file, that I had more than likely been molested. Can you imagine? I sent her his tests and photos of my ovaries full of cysts. No response. If only I had a voodoo doll that worked.

And, that is just one example. Conventional medicine has failed us, but alternative medicine has, too. I have been to several holistic docs that pass on their supplements that rarely work. If you asked me what has worked more; I would say medicine. Pills from docs. Oregano oil never did anything and glutathione has made me sicker than a dog. And holistic docs can be just like regular doc's. If they don't see you getting better they may want to dismiss you. My last TCM doc let me go because she wasn't seeing results.
 
Tally,

I know the feeling. I used to be haunted by that feeling. I have been fortunate to have been getting progressively healthier these last few years and now mostly am able to have a sort of low-level/normal life. The pressing panic of trying to find out what took my life away has been tempered by this.

I think my panic comes from the fact that I'm constantly getting worse. That seems to be a rare thing for ME so in a way I feel like I must be doing something wrong.
 
If you all want a good laugh, I used to imagine, even into adulthood, that doctors had some sort of magic empathic powers where they could feel the symptoms you were feeling if you described it well enough.

Once I got sick and had more exposure to doctors, I soon learned that they didn't have a clue any more than anyone else.

Most docs told me they didn't know what was wrong and they were sorry but they couldn't help me. Those were the more decent ones. On the other hand, my naturopath more or less gave me the boot after many years saying I didn't want to get well. After that, the feeling was certainly mutual, and I haven't been back.
 
Oh Jody, don't get me started. If I had to list all the cluelessly idiotic, worthless, and/or dangerous advice I've received from the MDs I consulted in the past, I'd be writing for an hour. So glad I steer clear of THOSE PEOPLE at this point. They are not qualified to treat anyone who doesn't fit into a neat category in their doctor manual, and we surely do not.

I stick to TCM--acupuncture and Evergreen herbs, see a naturopath for hormones and consult with the ocean for everything else.
 
I have had too many horrible experiences with docs to write about. One that I will never forget was an endocrinologist I was seeing at University of Penn. My hormones were so whacked out. I had high testesterone and DHEA. She said to me, "I see nothing wrong with you. So you have high DHEA. So what? That doesn't make you sick. I am one of the best endocrinologists, as stated in TOP DOCS of Philly. If I can't find something wrong with you, nothing is wrong with you." I was 23 years old. I am not 43. The very next week I went to a regular GYN who looked at my blood work and said, "Okay, this is easy...you have Polycystic Ovarian Syndrome. PCOS." He then did a vaginal ultrasound to prove it. The other doc wrote in my file, that I had more than likely been molested. Can you imagine? I sent her his tests and photos of my ovaries full of cysts. No response. If only I had a voodoo doll that worked.

And, that is just one example. Conventional medicine has failed us, but alternative medicine has, too. I have been to several holistic docs that pass on their supplements that rarely work. If you asked me what has worked more; I would say medicine. Pills from docs. Oregano oil never did anything and glutathione has made me sicker than a dog. And holistic docs can be just like regular doc's. If they don't see you getting better they may want to dismiss you. My last TCM doc let me go because she wasn't seeing results.


Misfit Toy,

Sounds like you've really been through it. I have been fortunate with my naturopath. She was the first one I saw, and her treatment has been working for me.
 
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.


Sasha

Such a book would be great. I certainly had no idea what end was up when I first got sick. Had no idea how to get through a day, had no idea just how much rest was needed -- took me a couple of years to cut back on all the activity that needed to be jettisoned, and just got sicker as time went on.

Knowing what to watch out for with doctors would have been a huge help. Knowing how to talk to them and how to protect myself would have made a huge difference.
 
If you all want a good laugh, I used to imagine, even into adulthood, that doctors had some sort of magic empathic powers where they could feel the symptoms you were feeling if you described it well enough.

Once I got sick and had more exposure to doctors, I soon learned that they didn't have a clue any more than anyone else.

Most docs told me they didn't know what was wrong and they were sorry but they couldn't help me. Those were the more decent ones. On the other hand, my naturopath more or less gave me the boot after many years saying I didn't want to get well. After that, the feeling was certainly mutual, and I haven't been back.


Caledonia,

My mom was a nurse and my dad a pharmacist whose best friend was a doctor. My mom in particular taught me that doctors are just regular people, even the ones who try to act like they are all-knowing. So I was less deluded with the Doctor as God thing that many people are susceptible to. Even with that, I was unprepared for what I ran into with my doctor.

Your naturopath sounds like a real jerk. Telling someone who is sick that they're not getting well because they don't want to is disgusting.
 
Oh Jody, don't get me started. If I had to list all the cluelessly idiotic, worthless, and/or dangerous advice I've received from the MDs I consulted in the past, I'd be writing for an hour. So glad I steer clear of THOSE PEOPLE at this point. They are not qualified to treat anyone who doesn't fit into a neat category in their doctor manual, and we surely do not.

I stick to TCM--acupuncture and Evergreen herbs, see a naturopath for hormones and consult with the ocean for everything else.


DB

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