Happened to come across this article on medical gaslighting. I had not heard of that term before. It reflects what some MPN patients report experiencing at times.
The term "medical gaslighting" describes when patients feel their symptoms were arbitrarily dismissed as insignificant or labeled as primarily psychological by doctors. For example, some patients are told, "It's all in your head," or "There's nothing medically wrong."
I would add to this erroneous statements like "The MPN does not cause that" or "This medication does not have that side effect." Even when true, the patient is still experiencing a problem that needs to be addressed.
This is another description of the fact that assertive patients receive higher quality care. Passive patients do not. We have to be our own best advocates. We each know our own bodies best. We know what we are experiencing. No one should ever be ignored or put off when they are experiencing symptoms from a MPN or adverse effects from treatment.
Wishing the best of care to all of the MPN family and friends.
Written by
hunter5582
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Well the term totally sums up what most here have experienced ….. Perhaps there needs to be one entire series of lectures provided to every medical person , in all seriousness ,about this.
Refreshing, in my case a very rare medical condition, I have to drum my symptoms into medical authorities, again and again, having to have my information ready for use at ALL times. I have no one to back me up, my specialist having to hang onto my shirttails as I bring out old and new information. It does not help that my NHS in the area that I live is unfortunately well known as being known, they would accept this fact themselves, not entirely their own fault as being the worst in UK.
Couldn't agree more... We all MUST be our own best advocates if we truly wish to receive the best possible care for our MPNs...
Cheers
Steve
Medical Gaslighting is a recognisable term, who knew. This is such a helpful posting pointing out the ways big pharma can effect medical practitioners and in particular our MPN treaments. Thank you buddy 😘 Adiewon
As always, you find what we all need to hear - thank you Hunter - I’m sure to lots of us on here you are a better information provider than their medical teams, particularly those under the run down, stretched NHS in the UK. When we get this kind of treatment, we have nowhere to turn and when people are feeling rough, especially older people, they can lack the energy to take it further.
I am lucky that the hospital in the nearest town to me has an excellent blood dept with oncologiste heamotologistes,they have just won an award for their excellence.I have been treated there for 12 yrs ,same consultant,also they liase with my excellent G P who now after all this time is also very knowledgable about my PV & I am able to see him any day I am unwell for one reason or another,I phone or e mail & that’s it appt immediately.I have the same nurse too 12 yrs who comes to our house for my pris de sang each month.Health care in Fr is really more than good.I am grateful for the care I have always received.I am sorry it is not the same for others on the site.
I know that some patients have experienced this kind of treatment, but I have been lucky that way. Doctors have always listened to my concerns and have never dismissed any symptoms. I have had one bad haematologist experience (a missed diagnosis) but not a gaslighting experience.If a doctor is not familiar with a particular side effect or symptom, the response should be "I haven't come across that before, let's investigate." The best doctors have the courage to admit when they don't know something.
I really agree with that sentiment. Doctors who put your health above their own ego are the best doctors. No doctor can know everything. Doctors who are willing to acknowledge their own limits and who want to learn are the very best doctors.
I have also been blessed to have a wonderful treatment team. I have only had one truly negative experience in care. I dismissed those docs and filed a formal complaint with the Medical Board. The rest of my care team listens, is respectful, and collaborates with me as the patient. My docs treat me like I am competent and capable of understanding the conditions we are dealing with. I would not have it any other way.
Perhaps it’s akin to - and formerly known as - having a poor ‘bedside manner,’ but somehow medical gaslighting implies being purposely dismissive, rather than merely ‘off-hand’ with a patient. Anyway, however we choose to define it, thanks to Hunter again for empowering so many of us with well-researched information, and I for one am certainly much more assertive than I used to be!
Thank you Hunter you add so much knowledge and information for us all and it is very much appreciated. Totally agree we have to assert ourselves to get things done otherwise you just get left to drag behind in tbe system.
Sounds familiar to me. A denial of my symptoms as being real, dismissing my experience. Wanting what they say to become my reality. It is horrible. I am strong but it is hard to battle and carry forward with my own truth, plus its exhausting, when it has happened.
This is something I have been through many times like most of us . What gets me more is when I have spoken to consultant about something they say I should see my GP , I go to GP for them to say I need to see consultant. Makes me want to scream !! given up on GP at the moment . I really need to find my fight again.Nettie x
Winston Churchill famously said "We shall never surrender." This applies to our healthcare too. Inadequate care can only continue when it is tolerated. It can be exhausting when we have to work so hard to access propercare when already feeling poorly. It is tempting to give up. the good news is that there are things we can do. Starting with firing any provider who provides improper care. We can also formally complain about providers who do not provide proper care. Doctors work for the patient, not the other way around. The patient hires, evaluates, and chooses to retain the doctors services - or not. It is always the patient's prerogative to replace a provider who does not meet reasonable expectations for care.
The good news is that there are a lot of wonderful providers in many healthcare systems. As others have stated, they have excellent providers who provide outstanding care. It is worth the time and effort to ensure that the members of your care team are providers who will provide the quality of care you deserve.
Wishing you all the best and do please find your fight again. Know that everyone here is in your corner.
I fully agree with everyone!! We know our bodies better than any doctor. I have had 2 episodes of classic PV symptoms before being diagnosed in 2017 through routine blood work. ( The GP in 2017 had experience with PV) In 2001 I went to a GP after being in ER. GP diagnosed with diabetes and put on medication for diabetes. The blood work was never completed before the diagnoses. The 2nd episode in 2008 when I was told something like I was hyperventilating. I still go through at times especially when I am not feeling well.
I have also seen my daughter in law go through this. She was at the ER with some pretty telling symptoms. Her tests all came back normal but her symptoms persisted. ER doctor told her it was in her mind. I was pretty upset because of what I have gone through. Now she is less likely to go to the doctor until she gets to the point of no return.
I have really learned about doctor's and what I have found I can't put my faith in them like I did. I trust God first and for most and then I trust my instinct.
Thanks for the post Hunter and all that you do here! Have a great day and sorry for the long post!!
Yes, it got so bad with me (PV) that I finally gave up treatment. I actually had the Dr. laugh in my face when I asked if I had cancer. My son was there, and the Dr. said "of course not - what you have can be fixed up". I was very humiliated, and was also told by their social worker that I could not participate in any of their programs to help cancer patients as I did not have cancer. I gave up, and feel more peaceful, not having to go to a cancer center where they feel I don't belong.
However, you are all very brave to continue to try and get better care.
It's not really my business but as someone with PV you really should be able to see a haematologist. Perhaps your GP could refer you again as we all need to be monitored.
The Dr. who laughed in my face and said PV is certainly not cancer is a hematologist. That is why I just gave up. I was just so humiliated that I felt they thought I was conning them into support better used by someone with a "real" cancer. It is painful just to think back on those times. I almost never post here, but the gaslighting thing post pointed out a real problem. And, by the way, Otterfield it absolutely is your business as you reached out to try to help. Thank you. Just forgot - JAK2 positive.
Unfortunately, some hematologists are not knowledgeable about MPNs. This is all too common. What is worse is when these docs do not recognize the limits of their knowledge. PV has been recognized as a blood cancer since 2008 by the WHO.
Making a patient feel humiliated is not just poor quality care. It is fundamentally unethical and a violation of basic patient rights. Any provider that behaves this way deserves disciplinary action by their employer or the medical board.
Suggest never giving up. People with PV can hope to live a high quality of live and have a potentially a normal life span when it is managed properly. Many hematologists lack the KSAs to provide optimal MPN care. That is why it is so important to see a MPN Specialist. Here are two lists.
Thank you Hunter5582, you have raised quite few good points and I also think that most of us did experienced some of these points and the way doctors responded on when we shared our experiences. For example I shared my concern that my skull is changing shape and the there are some grooves on my skull. I was told that is not true and when I requested MPN doctor check that statement she did not wanted to do. Interesting! Wishing you well.
Thank you Hunter for your very valuable input and information. I am learning from you all the time - being still a newbie. Whilst the professionals I see are not dismissive as such but I always get the impression they dislike my questioning. It takes alot out of me - energywise- to prepare for consultations and stay alert and on the ball during consultations. I am ever so grateful to belong to various forums and get my information mostly from those. Re my MPN: I now have had my Jak2 ET confirmed after BMB. Still have stable platelets around 600 ish for about 18 months. Still on anticoagulants. Still feel ok overall and holding off ET treatment for now. Next review in October.
Thanks, Hunter. As always, great information and advice. So many of us have had and continue to have this experience. You're right about self-advocacy -- and about how much of a difference a community like this makes when you're in the fight. Take care, everyone.
Thank you so very much for posting this. I feel this is a definite truism. We are hearing different opinions and different symptoms that very much unite us in this forum that I am extremely grateful for. I can’t even imagine not having this outlet. I have been dismissed by so many doctors in the past but now advocate for myself and never stop asking questions.
Hunter - thanks as always - great information! I have had to be the key advocate for family members various times in key serious situations/illness. It has been my experience that a respectful but consistent assertiveness is what is required to get individualized treatment/attention. Like many of us out there, most medical professionals are overworked these days and try to get as much done in as little time possible. They also perform patient "triage" meaning, for any patient/symptom that does not seem significant/threatening they can move on to more pressing matters. At the end of the day, it is the patient and patient care that suffers. Now that I have to advocate for myself, I have been very lucky to have found an MPN specialist who works with me to make sure my health goals are being met to the best of our ability. I do feel that this was in general his approach to most of his patients, but being armed with as much knowledge as possible, the vast majority form this site, definitely helped me set the stage from the beginning.
Given how much stress many of us are under; the uncertainties around our conditions, the individual presentations and the limited time (and sometimes knowledge) our medical professionals have I think it is key to go to each interaction (virtual or face-to-face prepared). Prepare a list of items you would like to go through (symptoms, questions, next steps etc.) literally have it typed out with you (or send in advance) and have a copy for you and for your doctor. Make them go line-by-line through each item until complete. I have seen in my case, and those of my family, that when presented with such a list, most professionals will try and go through it. It helps to make the visits more productive (for both doctor and patient) and it also helps, me at least, order my thoughts and to make sure that I don't forget something in the heat of the moment.
I have no issue whatsoever having a doctor say to me - "I don't know.".or "I have not heard of that before"...or "not in my experience/knowledge", but it should be followed up with - "let me look into it and get back to you (which usually means additional follow up by me)" or let's look into it or "thank you I was not aware of that"...if I don't hear that then it is time to seriously consider switching providers.
We, including doctors, are all human and have limited knowledge and experience but the best know what they don't know and are curious enough to want to know more!
I totally agree with that approach. It is precisely what I do. My docs like the written lists I give them. It helps structure the appointment an makes things very clear.
Like you, I like the docs who will tell me when they do not know something. I do not expect doctors to know everything. No one can. I do expect honesty and a willingness to learn. When it comes to MPNs, mosty docs do not know a lot. I often have to explain PV to my docs and how it can bear on different conditions. I had one doc ask me "What is Polycythemia Vera? It has been a long time since I was in medical school." I LOVE that doc (an orthopedist). He is a terrific provider.
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Getting an MPN specialist as advised by Hunter and experience of GasLighting
