arrow12 Comments
  1. Jeanie Pochatko
    Jun 30 - 10:25 am

    We are all so much alike in our stories of “Doctor” who treat us with such contempt. It is the worse part of this illness.

    Thank you for this and thank you , Cort, for putting these stories on your site. Sometimes we must all feel alone in this struggle and so it is good to hear that others are going through the same thing.

  2. Cort Johnson
    Jun 30 - 11:23 am

    I got chronic fatigue syndrome around 1980 – before the disease had a name…I remember going to Kaiser and getting enormous amounts of tests done and trying the anti-depressants etc that had no effect. Eventually I figured out that alternative health minded MD’s at least accepted the illness but despite the better environment they’d didn’t end up being much help either…It’s been years since I’ve seen a doctor, though…I think they’re probably better now.

    I do feel for those doctors who tried – Carol got alot of tests done – and were stymied. What I don’t understand is the anger they start to show towards the patients they can’t figure out. I remember one figure vividly who was struggling to contain himself..that was no fun….I was worried and lost and now my doctor – was mad at me..That was no fun…

    • Carol
      Jul 01 - 7:12 pm

      I also found more acceptance from doctors who offered “alternative” approaches — but often not more compassion. Since my CFS/ME had just begun, surely my first doctors would not offer that diagnosis, but I believe their annoyance stemmed from their belief that it was my own fault I wasn’t improving under their care.

      I simply don’t know if there’s anything they might have done to actually prevent the progress of the disease.

  3. Mary Jane
    Jun 30 - 12:10 pm

    I find it fascinating how your life mirrows mine and so many others. And the damage that was done by all the family doctors saying “exercise” I stupidly did it when my body was telling me not to.! Eh, I guess we were all desperate to get better. Dr. Jones quote was very accurate, a witch doctor would have been better! The day CFS hits is a day we all remember like 9-11….April 8th, 1999 @3:15 pm
    Thank you Carol, great articles!

  4. Victoria
    Jun 30 - 7:33 pm

    Like Cort, 1980 was the beginning of my long slow decline into a world of debiliating pain (& exhaustion) and it took until May 2006 before I got a Fibromyalgia diagnosis. My local GP conceded I probably did/do have CFS also, some years later.

    But with a long range of identifiable health conditions, I can appreciate that many GPs are bewildered and confused with so many obscure symptoms. Even if you’re ‘lucky’ enough to have blood tests that show abnormal results, it doesn’t make it any easier to diagnose. So many symptoms of CFS & FM mimic other health conditions. It’s all a matter of slow and detailed history taking and gradually ruling out other more identifiable diseases.

    When I finally quit my job and started slow walks (taking photos) in the local Botanic Gardens, it took a full 3 months before I could walk for hours. I genuinely believe slow walking eventually helps. I believe exercise (of the right nature) improves your mental health. It keeps the major body systems ticking over. You need to persevere though. You need to find the right exercise for you. You need to find the right diet that works for you.

    I firmly believe each sufferer is unique with differing symptoms and requiring differing treatments. It may take many years of trial & error before you find what works for you. Or, you may be one of the lucky ones that finds the right treatment for a full cure.

    We all walk a fine line between debilitating symptoms and reasonable wellness (in which to follow a satisfying and rewarding life).

    So now, some $98,000 of medical bills later, am I any better? Perhaps not, but I do have an enjoyable & rewarding life following a creative hobby – I just don’t live the life most healthy people would consider normal with a partner, children, job, active social life. adventurous holidays etc. But then even as a small child I was solitary and liked nothing better than quiet times and solitary pursuits, so what’s the difference. I spent too many years trying to conform and fit in with my peers and social networking pressure. Now, despite chronic ill health, I have a good life.

    And $%#@ to the family, friends, work colleagues etc who told me I was a wimp and exaggerating my symptoms.

    The day I stopped looking for a cure (is the day I got my life back).

    Believe it or not, my life is much better since I quit work and applied for a Govt Disability Pension. It does help having some sort of financial support, sure, and I can no longer afford tests, specialists and treatment. But the important thing is that I have a rewarding and enjoyable life now. But then I’ve had a good education, had various jobs and travelled extensively in my twenties. I’m more content to live a slow, simple life in my late fifties now.

    I do feel for the young CFS & FM sufferers though.

    • Charlotte Ingham
      Jul 01 - 3:12 am

      Hi there Victoria,

      I am from Australia, yet I can sooo relate to your experience. I too, was a child who enjoyed their own company, and thank heavens for that, having CFS you have to cope being on your own for many hours, days, etc, etc….. (even despite CFS I am not antisocial, still have many friends who are thankfully not used to seeing me all that often!) I came down with CFS in 1989, and it was a nightmare trip to diagnosis, as it is with so many folk with CFS/ME/FM. It is completely no fun being really honest because the road to CFS diagnosis is BRUTAL, no doubt about it (and it doesn’t get much better after that).
      I’m really glad that you have a good life (despite the ‘illness’), but as I’m sure you know, that ‘life’ will never, ever, be taken for granted! I don’t have any university eduction, (sadly, due to many circumstances in my life, and not due to my brain capacity ho hum) , but still I have many great interests in my life. My major passion is art. I just love anything artistic/creative. Every few weeks I have watercolour lessons with an amazing artist. I just with all my fellow CFS/ME sufferers all the best, as we all need support and compassion…

      • Victoria
        Jul 01 - 6:50 pm

        I’m from Melbourne, Charlotte.

        …..and it sounds like we are the lucky ones in having creative outlets.

  5. timv
    Jul 01 - 8:40 am

    Carol,

    thx for writing this. I really like that you specifically name the doctors. I wonder what would happen if somebody went back and interview these doctors and ask them if they would do anything different now days?

  6. Sherry
    Jul 01 - 9:27 am

    It is SO good to see in writing such similarities to my own experience. Several times I have sworn I would not see a doctor again unless I needed a bone reset and cast. I have thought that somewhere there was a secret file than any physician I saw could access. In that file was a mandate for how I was to be treated. “Be condescending, arrogant, impatient and borderline obnoxious with this patient. Offer…no insist, on anti-depressants.” I love the neurological exam comment in your article. I can touch my nose just fine. It’s thinking in a linear, coherent fashion that causes me problems. Oh, and remembering things like my dog’s name and my phone number.

  7. Sarah L
    Jul 01 - 4:17 pm

    I learned a new word today, mumpsimus.
    Meaning
    1. A view stubbornly held in spite of clear evidence that it’s wrong.
    2. A person who holds such a view.

    I think it is the word for all the doctors missing the clear evidence they are wrong. Sorry Carol endured so many of them.

    Sarah

    • Carol
      Jul 01 - 7:19 pm

      I learned that word today too on “A.Word.A.Day”! I didn’t think of using it to describe these doctors, but, hey, it works. I wonder how they would react today, 14 years later, to a patient with similar symptoms and test results.

  8. Stephen Trevathan
    Jul 03 - 4:01 pm

    When it comes to the diagnosis of chronic fatigue syndrome or fibromyalgia, it seems like getting a confirmed diagnosis can take almost a decade. All the while, you undergo so many tests and so many different doctors, some of which may still have trouble accepting that fibromyalgia is a real medical condition. Some studies even suggest that there are many people who end up going undiagnosed. For instance, I read about a study which suggested that a lot of men living with the symptoms of fibromyalgia could be going undiagnosed. This was a shocking read, and I was wondering if you had seen it yet? For anyone who is interested, here is a link to the article that I am referring to: http://www.clinicaltrialsgps.com/news/could-more-men-have-fibromyalgia/

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