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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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The Naive Patient

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 17, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    roxie60, xchocoholic, Beyond and 4 others like this.
  2. Tally

    Tally Senior Member

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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.
    Soporificat, beaker, aimossy and 3 others like this.
  3. Shell

    Shell Senior Member

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    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.
    xchocoholic, rosie26, beaker and 5 others like this.
  4. Jody

    Jody Senior Member

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    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.
    xchocoholic, MeSci, aimossy and 2 others like this.
  5. Jody

    Jody Senior Member

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    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.
    Sing, Shell, MeSci and 2 others like this.
  6. Valentijn

    Valentijn Activity Level: 3

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    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.
    Sing, xchocoholic, beaker and 3 others like this.
  7. xchocoholic

    xchocoholic Senior Member

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    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
    aimossy and Valentijn like this.
  8. Legendrew

    Legendrew Content team

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    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.
    aimossy and rosie26 like this.
  9. Jody

    Jody Senior Member

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    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.
    xchocoholic, MeSci and Valentijn like this.
  10. Jody

    Jody Senior Member

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    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.:)
    xchocoholic likes this.
  11. Jody

    Jody Senior Member

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    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.
    aimossy and xchocoholic like this.
  12. Misfit Toy

    Misfit Toy Senior Member

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    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.
    Sing, aimossy, Beyond and 1 other person like this.
  13. Sasha

    Sasha Fine, thank you

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    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.
  14. Tally

    Tally Senior Member

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    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.
    rosie26 and aimossy like this.
  15. caledonia

    caledonia

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    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.
    Misfit Toy and aimossy like this.
  16. Dreambirdie

    Dreambirdie work in progress

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    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.
    Sing and rosie26 like this.
  17. Jody

    Jody Senior Member

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    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.
    Misfit Toy and aimossy like this.
  18. Jody

    Jody Senior Member

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    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.
    MeSci, Sasha and xchocoholic like this.
  19. Jody

    Jody Senior Member

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    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.
  20. Jody

    Jody Senior Member

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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.

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