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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.

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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!

Tags: books from the doctors perspective, chronic illness, Chronic Snarkopolist Written by Melissa Travis, Chronically Ill books, educating chronically ill, finding chronically ill books, how doctors are taught to treat chronically ill patients, How Doctors Think by Jerome Groopman MD, managing chronic illness, proactive disease management

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