Medical gaslighting: when conditions turn out not to be 'all in the mind'
theconversation.com
theconversation.com
I have seen 40+ physicians after my reaction to flouroquinolones 11 years ago. They denied it was possible for the medication to cause issues. Even Mayo fucking clinic. I kept hearing the med is out of my system.
In the mean time the label received a new warning because of people like myself reporting neurological symptoms to the FDA.
Still, my EMG was normal so several neurologist told me I’m fine.
Then, I diagnosed myself with small fiber neuropathy with mild autonomic involvement, this is after years of research and learning about any possible causes of neuropathy and symptoms.
Requested nerve punch biopsy from a new neurologist at a top medical institution. Came back normal, so he said „no small fiber neuropathy”.
Well that’s incorrect. Skin punch biopsy has about 60-70% accuracy. He doesn’t offer any more help and says he can’t help me.
I find a new physician at another top medical hospital. They know how to perform the tests I want, which was some autonomic tests and QSART, which is a sweat test.
The autonomic test was normal. QSART revealed small fiber neuropathy.
I’m sorry but it is absolutely fucking unacceptable. I did most of the research and had to gently steer physicians myself. I would never get a proper diagnosis. 11 years! I kept hearing its anxiety. It’s in my head. This is all while seeing top docs, and even professors. The medical community is not doing their job.
There needs to a system in place that looks at results. If a patient gives up and goes to another doctor that actually finds something then there is clearly an issue.
I do have an idea for a business that would help physicians. Basically a central intake form that is constantly being updated with new research, it would provide physicians with some key areas to investigate and possible tests/treatments. Also inform the patient why such and such tests are being done and why the symptom is difficult to diagnose.
The business idea is a great idea. I just mail my doctor yearly to check if procedures X, Y and Z are done in my country yet and always get a polite nay. But that’s for a situation where the root cause is well understood only the procedure too expensive for our doctors to implement. (With all respect for the failings of US healthcare, the availability of best in class procedures is pretty awesome.)
I have learned that for an EDS patient it takes average of 10 years for a diagnosis. The tests are simple and any physician could do them following simple q&a and straightforward tests. Such a long time before diagnosis results in terrible outcome for the patient. The story of “its in your head” is often repeated here.
It’s not about giving 40 chances. Most doctors refused to listen and have performed tests that were unlikely to yield any results. They disagree with me the patient and if their assumptions were not correct they would often refuse to continue.
We need to centralize the knowledge base. Take what top specialist in their area of expertise know and review what support groups discover to see if we can improve.
For example, in small fiber neuropathy there is a physician Dr. Oaklander, she was so tired of hearing about people not getting the correct treatment she created a list of possible causes and tests.
Not treating autoimmune induced SFN can results in serious complications, while treating it can results in complete remission.
These stories are often repeated among many different communities. These communities found the top specialist in the country and proper tests, but their doctors refuse to work with them.
Medical professionals don't acknowledge PTSD they caused, and it's odd that I have to seek help from the same people who hurt me.
There are a lot of us suffering alone from medical neglect and gaslighting. I wanted you to know that I see you.
Diagnosed myself with sleep apnea. Kept telling drs it wasn't anxiety. After 10 years got one to order a sleep study by demanding one.
Celiacs. Told it was IBS and mental. Told to eat more grain for fiber. Finally developed peripheral neuropathy from B-12 deficiency. I was referred to a neurologist and I told her after all the test and only found very low B-12 I thought I had celiacs. She referred me to gastroenterologist for biospy of villus. I'm then 40, celiacs from childhood, never enough B-12.
Fibromyalgia Known I had it for decades. Flaired bad in 2020. PCM told me it was arthritis. She referred me to Occupational Health. After testing he said it clearly wasn't arthritis. I told him I thought I had mild fibro for 15 years that has flaired to border-line severe and already have one diagnostical confirmed autoimmune disease. He referred me to a rheumatologist who diagnosed fibro.
Narcolepsy type 2 without cataplexy. Excessive daytime sleepiness not resolved by CPAP so severe I would pull into parking lots or lay under a desk. Prevented me from finishing grad school. After 5 sleep drs for apnea over 25 years one finally prescribed me armodafinil.
Or “that time of the month”. It’s incredible, in this day an age, a huge number of doctors will immediately ask if it’s “that time of the month” in response to literally any mental or physical issue. Ask your female friends. I guarantee they have all experienced this.
Take the parent’s advice and talk with a woman about it. The amount of medical gaslighting they receive is astonishing.
The gaslighting works both ways-- they frequently lie or have no idea what they're talking about. Women are the majority of Munchausen cases, and Munchausen-by-proxy perpetrators are overwhelmingly female.
Any amateur self-diagnosis can be validated with enough doctor-shopping. It requires only time and some social engineering skill.
It is practically erased from the clinical literature though.
Sounds like me ...
Could you explain a little more about this? You're right in terms of not much literature being available about this from a quick Google search. I'm curious as I have ADHD myself.
For anyone looking the best website with info appears to be this - https://www.mayoclinic.org/diseases-conditions/schizotypal-p...
https://pubmed.ncbi.nlm.nih.gov/?term=schizotypy
which has quite a few papers in the research literature but the concept has not escaped into clinical practice. (e.g. there is a “schizotypal personality disorder” but it’s not used that often, I’m not quite sure if I want to say I have a PD, it seems it was used way too much in the former USSR)
The classification is controversial, particularly it's not really clear that schizotaxia is something you have or don't have (taxonic) or whether it is something dimensional that you might have more or less of.
Schizotaxia is believed to be a neurodivergence that is genetically determined, schizotypy is the personality organization that you get when you fail the Turing test in Kindergarten and get treated accordingly. See also
https://www.amazon.com/Loners-Life-Path-Unusual-Children/dp/...
This book comes the closest to telling a coherent story but it is completely bought into the taxonic approach
https://www.amazon.com/Schizotypy-Schizophrenia-View-Experim...
and he completely denies the possibility that you could find something positive in schizotaxia/schizotypy and also doesn't answer my emails. Other than that there are a few conference proceedings that have a few that is more balanced but muddier.
> I'll point out the related concept https://pubmed.ncbi.nlm.nih.gov/?term=schizotypy
which has quite a few papers in the research literature but the concept has not escaped into clinical practice. (e.g. there is a “schizotypal personality disorder” but it’s not used that often, I’m not quite sure if I want to say I have a PD, it seems it was used way too much in the former USSR)
The classification is controversial, particularly it's not really clear that schizotaxia is something you have or don't have (taxonic) or whether it is something dimensional that you might have more or less of.
Schizotaxia is believed to be a neurodivergence that is genetically determined, schizotypy is the personality organization that you get when you fail the Turing test in Kindergarten and get treated accordingly. See also
https://www.amazon.com/Loners-Life-Path-Unusual-Children/dp/...
This book comes the closest to telling a coherent story but it is completely bought into the taxonic approach
https://www.amazon.com/Schizotypy-Schizophrenia-View-Experim...
and he completely denies the possibility that you could find something positive in schizotaxia/schizotypy and also doesn't answer my emails. Other than that there are a few conference proceedings that have a few that is more balanced but muddier.
Edited to add: it’s not that I am dismissing schizotaxia out of hand. I’m saying two different things. One, I would be interested to know why schizotaxia isn’t in medical literature. Two, as someone with a diagnosed schizophrenia spectrum disorder, I don’t feel a diagnosis of adhd, autism, or generalized anxiety wouldve fit me as a child due to what I understand about these conditions as a counter anecdotal.
One some level I'd blame "politics" and selfish memes.
There is a developmental approach that is associated with Freud and then attachment theorists like Bowlby which would have it that I was parented wrong before the obvious big trauma of Weston Elementary and I tried a long time to conform with this belief system and discover some pathway by which my mom taught me to be anxious, I never found it although I had the thread that her own attachment could have been insecure because her mother died when she was a toddler.
I had a relative one time who was one of those people involved with the PTA who went a rant about how autistic and other disabled kids were draining the school budget dry and ruining it for the normal kids, so I think there's a political reason to deny syndromes that might create more protected classes that need more resources.
I managed to get one year at a private school where the bullying was not tolerated, I was treated like a human being, and I actually got some friends but we weren't able to get funding for more than that. A safe school environment plus recognition of my condition could have changed the course of my life in a big way.
And that's a very good reason schizotaxia/schizotypy to be ignored, to keep resources available for the normies and the other protected classes.
There is also a stigma associated with schizophrenia that makes it a very difficult label to accept.
The problems with executive function could be similar to ADHD and probably would respond somewhat to stimulant medication just as everybody else. My parents took me out of school when they tried to put me on stimulants and I'm pretty glad because I've seen what happened to many early adopters of stimulant medication. I think that whole enterprise of prescribing dangerously addictive drugs is not wholesome.
This book describes a pseudo-autistic syndrome
https://www.amazon.com/Loners-Life-Path-Unusual-Children/dp/...
that may very well be related to schizotaxia according to Lenzenweger where you get the social isolation, special interests. In that case (like myself) social perception is intact and possibly hypersensitive (I wouldn't look people in the eye because I saw things they didn't want me to see, things they'd often get defensive about and deny, maybe it was my paranoia some of the time but I know sometimes I was right). I would test normal for social perception in a controlled environment but my social perception screws up 10-20% of the time in the real world which I've compensated for in various ways, limiting what I do is a major one.
At the moment I'm mad at the branch of the "autism awareness" movement that has encouraged self-diagnosis, I went and got an eval for autism and found I didn't have it, it was quite the journey for me to find the truth. On some level I think there is a limited amount of headspace and I think various selfish memes (developmental theories about the family which were discredited in the case of autism, ADHD pill pushing, the neurotypical flocking "autism awareness" movement) have sucked the oxygen out of the room for one thing.
> Passed out during IUD insertion[1]
> Today I went in to get the Mirena IUD inserted in me, and instead, I passed the fuck out and started having a seizure and had to be taken to the ER.[2]
> I had my copper IUD inserted an hour and a half ago, it was the most painful thing I’ve ever experienced in my life.[3]
> Passed out from IUD.[4]
Contrast this with studies and the routine practice of IUD insertion[5].
> After an IUD insertion procedure, the researchers compared the pain scores of the participants. The pain scores were significantly lower in the group that received the lidocaine treatment, compared to the group that didn’t.
> In general, doctors don’t routinely offer lidocaine injection because the injection itself can be uncomfortable.
I don't know about you, but there seems to be a discrepancy.
Perhaps the cervix is an outlier, but in my experience, all injections are a bit uncomfortable. Still, we don't require patients to ask for lidocaine before getting stitches, biopsies, or dental work. Local anesthesia before potentially painful procedures is a sensible default.
Note: I'd like to get better sources than Reddit for first-hand accounts of IUD insertion, but sometimes we have to work with the data we have, not the data we want.
1. https://www.reddit.com/r/birthcontrol/comments/znda0k/passed...
2. https://www.reddit.com/r/TwoXChromosomes/comments/15i90r/so_...
3. https://www.reddit.com/r/birthcontrol/comments/ysapvs/normal...
4. https://www.reddit.com/r/Endo/comments/b96wry/passed_out_fro...
5. https://www.healthline.com/health/birth-control/is-iud-painf...
Fatigue, brain fog. Oh you're just bored said the doctor. Blood turned out fine. This lasted for about 3 years (short, when I read other people's experiences here).
We moved, and got a new PCP. The missus brought up her fatigue again and lo and behold, through a series of tests and referrals, all initiated by the new PCP, the ended up being diagnosed with Ehlers Danlos Syndrome.
Does that change that she feels tired? No, but at least it gives a reason and that does help in allowing yourself the liberty of taking it slower for a day.
I suspect, useless as my suspicions can be, that HOW symptoms are presented play an important role in how seriously a doctor takes their patients. Someone whose symptom descriptions change with each visit, whose symptoms are contradictory, or even patients who feel the need to describe every minuscule detail of their lives in hopes that anything helps provide a diagnosis can give the impression that the patient is not experiencing a treatable medical condition. Long-term histories with patients can taint a physicians outlook when James comes in one week because of an "itchy nose," and the next demanding prescriptions for his mild cold symptoms, etc. It can be hard to take him seriously when he presents with vague symptoms of what could be more serious.
The (only?) linked study[0], referring to women presenting with symptoms of heart disease (and referring to it as a "missed diagnosis" in the following sentence) used professional actors and actresses to portray symptoms (not looking at real patients with real symptoms or real outcomes).
- If my interpretation of figure 1 is correct, heart disease was considered more frequently in women and mental health diagnoses considered more frequently in men.
- According to table 3, for people 75 and older, heart disease was the final "most certain diagnosis" more frequently for women than men, and the mental health causes were exactly equal.
If a diagnosis is being considered, but ultimately decided against, could that have anything to do with differing baseline rates[1]? Particularly if risk at a younger age were in part sex-dependent[2]?
The study authors discuss this possibility (and even make a Bayes reference), and begin their concluding paragraph with "In summary, our results support the hypothesis that gender alone is not sufficient to produce bias in the diagnosis of patients with CHD symptoms." That part didn't make the article. (Also, I'm not sure that I agree with the authors statement that the difference in risk is independent of age -- CDC data[4] shows both sexes relatively sky-rocketing at about 80).
Now I'm not saying that "medical gaslighting" is not a thing, but AFAICT "gaslighting" almost always implies bad intentions (I don't have access to the full text of the BMJ article discussing the term[3]). I'm quite sure that there are some physicians with bad intentions, but I think that's the exception. Based on my experience in the field, I would guess there are many more of us who misdiagnose due to being lazy, tired, stupid, or apathetic -- but I still think that's different than gaslighting. *
What I am saying is that this article does a poor job making the case and tries to misrepresent its referenced study.
* I would speculate that even more common is physicians that are bad at admitting "I don't know" or "that's out of my scope of training" -- for example, I'm an emergency physician, so I know relatively little about most medical conditions that generally won't kill or permanently disable you if not acted on immediately. For better or worse, I readily confess "I don't knows," usually phrased as "you deserve the expertise of a doctor that knows more about X."
[0]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2825679/pdf/jwh...
[1]: https://www.cdc.gov/mmwr/volumes/71/wr/pdfs/mm7115a4-H.pdf
[2]: https://www.cdc.gov/mmwr/volumes/70/wr/pdfs/mm7046a8-H.pdf