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Chronic Snarkopolist: My Internist recommended a book called, How Doctors Think by Jerome Groopman M.D.

Post Published: 25 August 2010
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 8 responses. Leave a comment

I read it a month ago and blogged about it even. I loved this book. I’m glad she told me to read it. I’m going to talk about it here because I think it is ESPECIALLY powerful for my chronically ill friends to read.

This book discusses ways to raise questions with your doctor and ways to build relationships… and ways that your doctor might MISS important things… AND most importantly for people who are chronically ill – ways that doctors are taught NOT to see “zebras”… they are taught to “hear hooves and know they are horses and not zebras”.. and yet- people like me and most of my friends are the zebras… we are people who have oddball diseases and /or we have multiple wackjob illnesses.

Doctors are taught that it quacks like a duck and IS a duck. So it is OUR JOB as a patient to ask simple questions that help a doctor re-think quickly – so that he or she can assess our illness or complaint or symptom and think “maybe this is a zebra” or maybe this is not a duck but a quacking freakjob illness…. And ways WE as sick people address our doctors – calmly, posing questions to them like, “what’s the worst thing this COULD be” makes our doctor stop and go back and RE-THINK it.

They are used to getting DOZENS of strep or flu or sprains a day. If they see us and our swollen glands or oddball things are lupus (or celiac/crohns/etc etc) it is NOT going to be the first thing they think of. It took many many MANY years for me to get diagnosed with lupus… in fact – my internist and my neurologist called the lupus flag before a rheumatologist did. (Because I was seeing SHITTY TURKY BUTT RHEUMIES with attitudes who needed to RETIRE).

And this book also discusses how you DESERVE to go to a doctor you TRUST. And get 2nd and even in one case a woman who got a 14th opinion… b/c she had been dismissed SO MANY TIMES as a psych case when in fact, she had a REAL PHYSICAL DISEASE that would have ultimately killed her. She was NOT faking it. (just as you and I are NOT faking our seizures or our kidney failure or our strange lumps or anemia or lymphocytes). And by the time she went to a last resort doctor, he let her start her story from the beginning… and he LISTENED TO HER. And he didn’t LOOK at her previous chart. He pushed it aside and let HER tell her story. He didn’t listen to other doctors or THEIR diagnosis. He listened to HER. And he decided to THINK FOR HIMSELF. (The sign of a GOOD and not lazy doctor).

And THIS is what we need to help our doctors do. This book has helped me too.

I have to admit that I’m fairly seasoned… and I sort of did this on my own… but when it came time to do a CT scan or not – I posed a powerful question to my surgeon that helped HIM make the decision to give me one. I said, “Is it normal for ketchup and popcorn butter to come out of my butt doctor?”

It is graphic yes– and gross yes. But THAT is what was happening. It was a way to help him find the hidden abscess he needed to find.- b/c CT scans are NOT something doctors are encouraged to just willy nilly order… and he was being “conservative.”.. so my question was put out there to help HIM remember my symptoms. And it helped him see if there was any cancer masses… and it helped HIM know in his own mind what he wanted to look for and how high up. And I didn’t need to say anything “medical” or anything other than WHAT I WAS EXPERIENCING in the way *I* was personally experiencing it. And my doctor needed to use that to translate into, “Order CT scan – look for xyz, and then proceed.” Instead of simply saying, “You have an anal fissure.” Which is what he WAS saying a month before.

The main questions this book reminds us to ask of our doctors are this :

“What else could it be?” – so your doctor might consider other options and think of multiple ranges of possibilities. I also like the idea of asking, “what’s the worst it can be?” I don’t usually do this- but it’s a fair question and gets your doctor to be HONEST with you… just don’t be a freak if he or she TELLS YOU.

“Is there anything that doesn’t fit?” – this also helps your doctor think more BROADLY – scanning his or her brain to plug in an outlier scenario and avoid “confirmation bias”

And here is a biggie for me and most of my friends:

Is it possible I have more than one problem?” – Most doctors do NOT wish to deal with it- but YES YES YES- probably you do. Multiple simultaneous diseases seriously confound anyone – even the best doctors. Easiest if you just pinpoint the worst culprit and then chip away- one at a time. I started with the seizures and went from there. When I could THINK STRAIGHT – things fell into place. I’m STILL working on getting my diseases organized (and new ones STILL like to crop up.) Auto-immunity is a battle sometimes… so is cancer… it comes back sometimes… you can handle it. DO NOT FEAR IT. Handle it. Deal with it. Life with it. But do NOT let your doctor be blind to the idea that you have MULTIPLE ISSUES.

Tell what you are most worried about. – this helps doctors create a wellness plan and either reassure you OR give you ideas for your own healing strategies. (I personally go in ASKING for visualization techniques before a surgery or big procedure and ask them to be on my healing team… and with my REAL TEAM PLAYERS I make sure we ARE on the same page about my health. I MUST BE LIKED. I must know my doctors like me. This book breaks it down big time.)

Lastly

Retell the story from the beginning. = sometimes hearing the story from the beginning helps doctors see your health in a new way.

As far as getting advice about your illness:

I generally avoid some online support areas and visit others… it is strange but true. The ones I avoid are the ones where people whine a great deal and there seems to be a vortex of depression and pain. NOW- YES WE LIVE WITH THAT… but there sometimes seems to be the impression that we MUST live with it permanently in order to be just the right kind of patient. We often seem to BRAINWASH each other into thinking we have to have JUST THE RIGHT symptoms.. I FEEL for all of us. I lived with douchbaggery too – and horrific doctors and I have been manhandled as well… But I try so hard not to let me BELIEVE that it is ME. I just get up and go to a different doctor.

And — you can also get your doctors to re-assess by asking them to look in new ways or to HEAR YOU .. look with new eyes, to RE-THINK. Even though I was often in tears because of the pain (and me – seniorita never takes pain meds was hoovering them down during this time b/c of the intensity of it – for real) I TRIED to stay calm when I spoke to him about it.

For example – after my last surgeon said to me, “Melissa – you have an anal fissure- why are you fighting it?” I said, “You are not LISTENING TO ME. You are not HEARING ME. THIS is NOT the pain of an anal fissure- there is BURNING AND LEAKING COMING OUT OF MY BUTT THAT IS LIKE POPCORN BUTTER.” That stopped him. He didn’t REALIZE that I was having an infection as well. I had to iterate that to him more clearly.

And THEN the G/I docs found more more more. They had to work together like a team see- actually TALKING TO EACH OTHER… and we have all successfully collaborated TOGETHER. We did! But it took ME to stand there and KNOW MYSELF. It took ME to tell my doctors NO IT IS MORE THAN THAT. But in a way that was polite and awkward and all the strange and oddball ways I conduct myself… b/c I am my own person. You have to be TRUSTED – b/c he didn’t SEE IT from where he stood… it is easier for him to SEE an anal fissure and not look any deeper. He saw a horse – not a zebra – and according to this book – if you are a zebra- you MUST get your doctors to see with new eyes and in more broadly and think more critically.

Whatever you do — try to do it without whining. But DO IT. Be brave. This book was awesome. It gave me heart BECAUSE it also said something I knew in my guts.

This book also iterated that that any doctor who thinks another doctor doesn’t like them will just LEAVE and go to a new doctor. They just go. And you know that I struggle to make a relationship… because you know that WE are harder to deal with.. and you know that once we have made a relationship the bonds are there… and WE – WE THE PATIENT have to go the extra mile. I’ve always taken it upon myself to extend more because of what I know about how draining it is to work with chronically ill patients… and because I know that I myself am more emotionally involved.

Even if you can stay clinical and withdrawn and don’t need love and affection you could still benefit from this book… but then again – you are probably not clinically ill… and you are like anyone I know. If you ARE chronically ill – you SHOULD read this book. I’m so glad I did. Because it also discusses the dangers of being too well loved by your doctor OR judged or too well hated. You can pull them up hard either way and make your doctors give you good medical care – and make sure that they TREAT YOU.

AND how YOU- can help your doctor be his or her best. YOU SHOULD KNOW THESE. I wrote my surgeon a note before my scary surgery after our big falling out – telling him how much I trusted him and how we were a team. And I KNOW it bolstered us both. I hadn’t read this book yet — but I KNOW it did both of us so much good. I know it did. Patients and doctors are TEAM MATES- ESPECIALLY IF YOU ARE CHRONICALLY ILL AND NEEDY.

So – Put this on your put this on your next reading list and read it. I am going to tell my Internist THANK YOU SO MUCH! Because it changed me a bit… and it also gratified me that I have cobbled together some ways of doing this over the years — with my own mistakes and messing up all mixed in.

Let me know what YOU think when you HAVE read it…  I cannot wait to see other people’s perspectives on this!  We need to start a reading club! Yes?

I’ll see you same place next week! Kisses!

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8 Responses to “Chronic Snarkopolist: My Internist recommended a book called, How Doctors Think by Jerome Groopman M.D.”

  1. robyn hahn says:

    Melissa,
    I have also read this book, and discussed it here in the past. I found it dry, however, and difficult to get through, despite the large amount of good information. You have boiled it down into the most important points to be helpful to patients.
    A similar book, that I also talked about here before is Dr. Atul Gawande’s “The Checklist Manifesto”. It delves into how medicine has evolved into what it is today, and how to use that information to help you. It’s an “easier” read–Dr. Gawande is a fantastic writer.

    Thanks for all you do to help patients, Melissa! I love your columns!
    Robyn

  2. Melissa Travis says:

    Hey Robyn!
    I will have to check out Gawande’s book! I LOVED Groopman’s book… it is funny what one person finds dry and another find’s easy to read. I think what I loved were the doctor’s stories… and how he humanized the progressive details inside… how difficult it is to think DIFFERENTLY.

    I remember from that perspective being thrown “to the wolves” on the teaching floor and having undergrads expecting me TO KNOW my subject areas… and me thinking, “crap- I’m just like you– what do I know– the more I know – the more I know we’re all fools!”… and from that perspective – it makes me trust doctors LESS!!! Yet they seem to have so much bravado.. AND THIS FRIGHTENS ME MORE.. and gives me empathy too.. (unless they are being tools.)… And I suppose that is why I liked this book… because I RELATED.

    Good to see you again. I’ve missed you. I’ve been thinking of you. 🙂
    xx
    Melissa

  3. Amanda says:

    This sounds like a book I need to add to my collection. Getting my words out is always a struggle. Never used to be a problem because when you only see your doc for an annual exam that is always normal, what do you need to talk about? Nothing. This year has changed that. Now I ask about every hangnail and hiccup. In return, I find that they ask me about cuts and scrapes that I have. I feel involved and my 2 docs seem to be interested and observant. I want to be better at this conversation though. That 15-20 minutes of ‘doc’ time has to be used well, not with me looking out the window and saying “ummm” because I don’t want to talk about poop.

    Amanda

    • Melissa Travis says:

      Hi Amanda!!

      Yes – this book did wonders for me– not just for articulating myself – but also to understand how doctors compress information to make snap decisions – and how I can help them widen the scope if I think I have something bigger going on… OR — if I think I have something average – how to just let them work and be quiet. 😉

      It was a good read AND – my Internist recommended it BECAUSE I’m a “zebra” and she WANTS me to help with the hard decisions and keeping her (and other specialists) on their toes… and trust me — I’ve used some techniques by asking them to “cast a wider net” and so far I’m hoping it has worked.

      xo
      Melissa

  4. Linny says:

    Wow I wish I’d read this book before yesterday! I went to my internist. I was having very strong bad spells of multible syptoms. I felt like fainting and throwing up and headache aND A TIRED THAT HURTS AND MY THROAT FELT SWOLLEN AND well a lot! I was able to get right in. I had had my twin 4 year old grand~daughters over night while I was fighting these horrible feelings. Luckily I’ve become pretty tough thru all my junk and I held it together, barely. When my daughter picked them up I called right away. Being Friday afternoon I didn.t want to have to suffer the whole weekend.
    I got in. My endo had helped me switch to Armour more than a week ago and my Internist didn’t realize. I had a lesson from him about the Synthroid~Armour depate and he CLEARLY is against Synthroid. Telling me Armour was simply a product of a “meat company” and who knows what they have ground up in there. I didn’t fight with him, I withdrew. I had been finding him to be a good DR. But now…….
    He continued. Looked at my chart decided to talk to me about my updates on Mamagram and Colon checks etc….I finally interupted…..do you think this is the flu? Do you think it is mt THYROID…mostly just gave me one of those pondering thoughtful moments when a Dr. has nothing to say.
    He ordered a blood test…Cholestrol, fast and I’ll see you in 2 to 3 months.
    WHAT? THATS IT?
    I went home, called my husband from the car I couldn’t wait to tell somebody. What the Hay???
    I went home and started my own dianostics….I thought what was I doing before I got sick??/ It occured to me that I had sprayed my roses with a pesticide…..I read the lable and looked it up….Turns out this was worth considering….I called my DR back , got his office and she took down my question. He never called back….I continued my thoughts….WAIT I KNOW>>>>>> THIS IS HUGE!

    WITHDRAWL~~~~~~!!!!!! I was having WITHDRAWL….looked it up on line….very very hard to get to something that hasn’t been blocked by the makers of SYNTHYROID! But I found some things….I believe I’m right…..Withdrawl for the very drug that is suposed to be making me well. This must be what he knew…..HA~CAUGHT!
    I am so mad…..I also read a lot of the side effects from taking
    “SIN THYROID” What the hell is going on!!! Is this about $$$$$$$$??????????? Because it sure isn’t helping us get well. Thanks for letting me vent….I want the community of Thyroid sufferers to know what I think!!! I BELIEVE WE ARE BEING USED……..I will get this book! I am staying on Armour. XXXXXTO MY CO SUFFERS >….Linny

    • Melissa Travis says:

      Hey Linny,

      YES- RANTING WORKS!! Getting it off our chest helps!!!! I’m sorry you’ve been through the ringer. I am.. but I’m also glad that you knew that whatever happened WASN’T right for you. I’m SORRY that what happened wasn’t in your best interest. We all have so many war stories. We just do. oy. ugh. blah. *kerplow*

      BIG GIANT HUGS
      xo
      Melissa

  5. Linny says:

    I’m going for bloodwork tomorrow……I did see in his defense that he has A LOT OF BLOOD WORK! SELECTED……wonder why he said nothing….
    C Reactive Protein High SENSITIVITY
    HEMOGRAM/PLATELETS {ZL HEMO}
    COMPREHENSIVE METABOLIC PANEL ZL-CMP
    LIPID PANEL {ZL -LIPD}
    TSH {ZL-TSH}
    hummmmm, I wonder where he’s going…..
    Because of the type of insurance we have I go to a Quest Office for blood work, I like them better than any I’ve gone to thru the years.
    I have difficult but not impossible veins, she always used the butterfly needle for me……{Thyroid} Ha …I never get black and blue anymore.

  6. Nicole Wells says:

    Dear Melissa,

    Thank you SO MUCH for all this information. It’s kinda sad we have to resort to a book that helps us deal with doctors. I can’t walk into another doctors office without being on my guard, and in complete control of the situation. I had a endo (from UCLA, supposedly one of the best there) nearly YELL at me when I asked about side effects from RAI. It’s like, I ask a lot of questions asshole, and I have every right.

    The biggest problem I’ve had with endos is that they’re SO focused on diabetes that thyroid autoimmune diseases take a backseat. It’s almost like diagnosing, prescribing medication, and touching my goiter is a fucking hobby. I’m close to giving up on the endos and just going to my mom’s GP.

    Thank you so much for sharing the descriptive “ketchup and popcorn” ass – that’s RAW girl. It’s almost like you have to be THAT descriptive for doctors to take notice. I admire your strength, and the power you take back from the many docs you have seen. You rock!

    xoxo,

    Nicole

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