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Dealing with disbelieving doctor

Messages
53
Okay, folks, I'm claiming a point for not throwing things. Called a doctor that had been recommended to me, as our health care got involuntarily changed the 1st of the year. Under "major complaint" I said CFS/ME, and immediately got told that it's bull****. That "Since that silly movie came out, everyone thinks they have it". When I cited statistics, and symptoms, I got told that "it's just fibro. Exercise more". He never asked what I had been doing for exercise (I live on a ranch--weight lifting used to be a 60 pound hay bale in each hand). Cleaning stalls was good cardio, by the time you got it cleaned up.
Then, when I iterate that, quite basically, my friends with diagnosed fibro feel BETTER with exercise, while I end up in severe pain with 1/2 the exertion, he tells me that I'm not exercising enough.
Needless to say, I'm not going back. But how do others deal with this prejudice and ignorance?
 

TenuousGrip

Senior Member
Messages
297
Needless to say, I'm not going back. But how do others deal with this prejudice and ignorance?

That's how I deal with it: by never going back to that doctor.

Years ago I thought I could change the doctors. Life got better ... for me ... when I abandoned that charming little notion ;-)

All the best to you in finding somebody whose clinical knowledge is more recent than fire and the wheel.
 

BeautifulDay

Senior Member
Messages
372
It's was very difficult when our insurance changed and we had to find new doctors. @lllamamom I feel for you.

It's can be a constant uphill battle. In addition, when coming across such ignorant doctors, the fight to be taken seriously becomes an inner battle of strength and hope. Of finding the will to keep going when being dismissed as told it's stress or nonsense or being told to workout more.

Then once taken seriously, the practice might not be a fit. Yet, often we stay anyway because the alternative is worse.

The battle is won in the head and heart. Our game of Life is immensely different than theirs.
 
Messages
53
There are only two doctors in the town that take our insurance. Sigh. It didn't help when he did the useless "Squeeze my fingers, push up on my hands, etc" tests and pronounced me "plenty strong". Telling him I've lost +50% of my muscle strength apparently didn't register. All he saw was a mid-60s woman who could turn his lily white fingers whiter. <evil grin>. I'm about to quit being polite. I need help, not platitudes!
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I add the doctor to my hitlist. My hitlist is a list of doctors who I have found to be negligent in their duty of care towards me.

Once I have objective evidence of what is wrong with me, I will write to these doctors individually, explaining to them how their negligence and arrogance causes harm. I will suggest that they know less than they think they know, and that they should practice with humility so as to make sure their damaging attitude does not cause further harm to people in the future. I will ask them if they entered medicine to stroke their egos or help sick people. I don’t expect a response.

I already sent a similar letter to one doctor. He had prescribed me GET. I highlighted all the problems with the PACE trial then asked him if he had any treatment for me with a good evidence basis. I never heard back from him. He is still on the list.
 

pattismith

Senior Member
Messages
3,926
I add the doctor to my hitlist. My hitlist is a list of doctors who I have found to be negligent in their duty of care towards me.

Once I have objective evidence of what is wrong with me, I will write to these doctors individually, explaining to them how their negligence and arrogance causes harm. I will suggest that they know less than they think they know, and that they should practice with humility so as to make sure their damaging attitude does not cause further harm to people in the future. I will ask them if they entered medicine to stroke their egos or help sick people. I don’t expect a response.

I had the same plan, unfortunately many of them will be already retired when I will be in a position to do it :lol:
 

Kenshin

Senior Member
Messages
161
Is there an online review service where you can award him 1 star? I think Google does something like that?

Sorry that happened to you. I've been laughed at by doctors and ridiculed before and it was horrible. :(

((hugs))

That's not a bad idea, a doctor ratings website, though it could get confusing with all the overlapping names, and the horny doctors trying to search for a doctors dating website.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
A doctor like that one @lllamamom is clearly not educable, so must be fired!

I am sorry you had to hear that negative, untrue, uninformed stuff, supposedly about you, coming from people who are supposed to be informed, respectful, and helpful.

I hope you can find a better one, with that change in coverage you had!

I too, get sad and ANGRY, as @RebeccaRe said.... but do try to keep repeating the truth to yourself, that ones like that ARE ignorant and biased and uninformed, and they are refusing to listen and to then, reconsider the position they had previously decided on, with no factual evidence, and without even listening to your case.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I've found its best not to lead with ME/CFS, but bring in my abnormal labs and a list of all my symptoms and ICD10 codes.

And a copy of the attached, annotated with my issues written next to the appropriate boxes. I've never seen Dr. Holtorf, but his diagram makes a lot of sense for many of us.

Then I share my list of goals, concerns, and questions. I've gotten varied responses, but at least it keeps us from arguing about whether ME/CFS is real or not and keeps the discussion focused on the concerns and questions. And, its better to drive farther to see s useful doctor than a useless one nearby.

Good luck with Doctor #2!
 

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i-lava-u

Senior Member
Messages
691
Location
Utah, USA
disbelieving doctors, rrrrrrr, so annoying indeed!! when i first got ill at 17 the doctor told me my fatigue was normal because i was a teenager. he said my dramatic weight loss must be from an eating disorder...unfortunately, only the first of far too many bad experiences

i wish there was some way to magically have these people experience what it feels like to have this illness. they would never doubt it again.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
I'd like to rate more of the doctors I've met in the past. But the worst ones worked in psychosomatic clinics (where I had to explore my subconscious "illness gains", "repressed trauma" and why I don't want to get better three times so far). As hospital doctors they're not listed on rating websites (just the clinic).

Can't wait for the day a biomarker is found and this is how I imagine myself:
giphy.gif


love it @Cheesus and have many doctors to add to your list! :devil:
Hi @Gingergrrl, I'm curious, because you're already at that point that we dream about: you have objective evidence about abnormalities and a successful treatment. Did you have a list and did you write any of your former disbelieving doctors and if so, did you get an answer? :)
 

Gingergrrl

Senior Member
Messages
16,171
Hi @Gingergrrl, I'm curious, because you're already at that point that we dream about: you have objective evidence about abnormalities and a successful treatment. Did you have a list and did you write any of your former disbelieving doctors and if so, did you get an answer? :)

@Joh it's kind of complicated to explain but since I am only 50% through the Rituximab treatment and dealing with two different insurance companies, I am not in a position to say anything to any doctor who could become vindictive and try to sabotage my treatment. So for now, I am working with my ME/CFS doctor and Mast Cell doctor (who are both amazing) and not saying a word to the docs on my Cheesus list. But hopefully that day will come...
 

Hajnalka

Senior Member
Messages
910
Location
Germany
the docs on my Cheesus list
I think a new term is coined - Cheesus list. :)

it's kind of complicated to explain
I follow your journey closely, so I guess I'm surprisingly well informed for someone who's on another continent and in bed. Fingers crossed (in German is would be thumbs pressed) that your treatment continues to be successful and covered by insurance.

May the day for all our Cheesus lists come soon. :hug: