Difficult patients do exist.
A person that is hard to manipulate will be labeled a difficult patient by a physician who is a narcissist.
There is little likelihood that a patient who is hard to manipulate will influence a narcissist physician due to the power imbalance.
It is not a matter that will be corrected by education/training.
I feel many of us have been a victim of this myself included.
Due to the complexity of my case and the ignorance of consultants I was labeled with FND.
Yet the fact is I have rare complex autoimmune diseases that many know little about !
I rather like the word narcissist.
My now very nice, though not super astute doctor, calls these narcissists “gaslighters.” I have walked out on doctors several times and a few times (when I knew I wasn’t coming back to anyone related to the doctor) I actually spoke up and told the doctor what I really thought about his/her lack of “bedside manner. “. I wrote a letter to the manager of a clinic. I got a certified letter “firing” me as his patient. (From the doctor; not the manager). I just laughed off the insanity of it all. (Although in the moment it was traumatizing)
I was 'gaslighted' by the neurologist I was sent to see for my PA neuropathy ! He was a swine of a man to say the least and I now have a case against him. It's a waste of time we cant win against these people they all stick together.
I laughed at your incident at the Drs because the very same thing happened to me ! 🤣
Sorry if you've had s bad experience WIZARD6787
I was not speaking to an experience rather to an evaluation.
Hello WIZARD, whoops that probably includes me too. That is me trying to be cheerful.
I realize that many gp's belittle us with such labels. TATT (tired all the time) is another one. This goes on our notes so we are not treated seriously.
Best wishes to all who have had adverse experiences with gp's.
Hello WIZARD, whoops that probably includes me too. That is me trying to be cheerful.
I realize that many gp's belittle us with such labels. TATT (tired all the time) is another one. This goes on our notes so we are not treated seriously.
Here is the thing. When I wrote it was not about "them" rather about me in that what they do is not as important as what I do. Made easier now I have improved way beyond what "they" are capable of with "their" understanding.
I am well aware that my healing will be seen as all in my head. That my EKG which was abnormal in a way they had never seen and now is not, my liver function is now normal due to my B6 supplementation.
I have not checked my Total Blood Count but know from experience my white blood count is now within range.
That I was able to improve on "their" methods and improve the results of the tests will need to be ignored for "them" to control the narrative that they are better than me. That is OK, I do not bless nor feel the need to be blessed.
It is helpful that those I love are happy for my success.
Hi Wizard6787,
Difficult people exist and we can all have moments of standing our ground. I have moments of being a complete royal pain and I will own it.
I completely surprised one doctor when I slipped into my super sarcastic mode. His mouth dropped and said, You never said that ? I nodded, pointed to my friend who also attended my appointment and explained that we were a bit of a double act.
There does tend to be a bit of role playing in health care but there are clinicians who promote person centred care.
One of my favourite memes is :
‘I wish I were a nicer person, then I laugh and continue my day.’
I rarely put the letters after my name but recently thought, yes, why not ?
For the sake of balance here (and across much wider areas of medicine than B12, or just adult patients advocating for themselves), yes there are times when being a “difficult patient” is incredibly necessary in order to not get fobbed off due to gaps in current medical knowledge, but times when a “difficult patient” can mean following a completely non evidence based stance that is dangerous. I’m not going to offer examples because YMMV and I don’t wish to start unrelated arguments, but we all do owe it to ourselves to pause from time to time and consider where we are getting our sources from, and how trustworthy they are.
To be clear though, I am placing B12 deficiency in the the first camp and there is published peer reviewed stuff out there to back up it’s importance. GPs just aren’t that aware of it. My GP remained relatively open minded but there was a point (when instrinsic antibody testing came back normal) when I though they weren’t going to offer help. I brought in a list of my symptoms, cross referenced to a list of symptoms from the B12 Society, and said that whilst normally I am keen to be reassured by health professionals, in this case I knew something was up and I was going to keep advocating for myself. I was quiet and polite but also stated how unusual it was for me to be so tenacious in these circumstances; it was very effective.
Thank you for this balanced and thoughtful reply. The nature of B12 deficiency and its symptoms are so diverse and often ‘soft’ that I can understand GPs being dismissive. However, I am also worried now that they think we all want B12 for aesthetic reasons, as was mentioned to me yesterday by a therapist, when I said I was on regular injections! Looks like just another battle to face in our attempts to convince GPs of our condition.
Thank you MindfulSquirrel,
You are correct, clinicians will raise eyebrows and totally disregard Dr Google.
Yesterday, I worked like a dog on my very lengthy comments for the draft of NICE guidelines. I was too exhausted to shower and cook.
Just an FYI, I want to be wearing my scrubs again !! Oh fancy that a clinician who has no choice but to inject everyday. My misdiagnosis meant I had to leave practice because I could barely get out of bed. 😉
How right you are, Wizard! Too many physicians with huge egos will not tolerate being challenged with information they are not aware of or do not agree with. I have been dismissed from multiple practices because I will not be bullied or gaslighted by under-educated physicians and they do not like being challenged. But the fight continues.
Snuke,
Keep looking, you will find the gems and when you do, you may want to jump over the desk and kiss them. They are out there.
👍🏻
I have written dozens of thank you notes and even given gifts to doctors (and sometimes their nurses, receptionists etc) who have treated me with kindness and dignity.
The letters I got from clients as a professional were very meaningful to me and I do often write thank you note or letters. I make marbles and give them to people that have shown me kindness.
My husband carves little birds. More than one health practitioner has received one. I hope none of my words about “gaslighting doctors” offended you. My experience has not been good, generally but I am “a complex case.” That said I am so very grateful when treated with respect.
I am not offended at all and gaslighting is systemic in the medical field.
I am a complex case too and very often misunderstood. Here we go, there’s the book, The Secret Life of Introverts.
I learnt social skills in my late 30’s. One family member would say great conversation as I barely spoke. I would just nod. Little did they know that I have a whole universe in my head. 😄
Another one bites the dust !
Pernicious Anemia with worsening neuropathy. I'm new here.
Is there a difference between US guidelines and U.K. Guidelines for treatment of PA? Also iron treatment question...Definitive answers to questions about B12 treatments
Mayo Clinic studies B12 def, are very interesting!!
