Many patients, especially those with rare or chronic conditions have experienced this before: medical gaslighting.
But what is medical gaslighting and why is it harmful?
And what can we do if this happens to us?
Imagine this: You have weird symptoms; you are in pain every single day and you don’t know why. But you know one thing: you are suffering. You finally make the decision to see a doctor and speak about this issue, because the symptoms become so disabling you can hardly get through everyday life.
You open up about your struggles, hoping to run some tests, get to the bottom of this and find a solution on how to treat this and increase your quality of life.
But then this happens: the doctor looks at you and says: “No, this cannot be. I have never heard of such symptoms before. I cannot help you. Have you considered seeing a psychotherapist?”
You leave feeling confused and frustrated. You didn’t feel depressed or anxious before, but now you question your entire experience and start overthinking everything that happened in the last few months. “Is it really all in my head?”
What sounds like a terrible story is unfortunately something that happened to millions of people at least once: medical gaslighting.
Medical gaslighting can occur in many different forms. But what even is gaslighting and why does it feel so terrible?
What is gaslighting?
Gaslighting is a form of manipulation, where someone questions and downplays the reality of someone’s experiences or emotions. It often occurs in abusive relationships. This can lead to people becoming very insecure and questioning their own reality.
Medical gaslighting is when this happens within a medical setting. For example: a doctor downplays or even negates symptoms that a patient is describing and insinuates that they are caused by something else, like mental health issues. They might even go so far as trying to convince the patient that they are imagining the symptoms, that what they’re experiencing “cannot be” or that it is „all in their heads“.
People often report, that they were given the diagnosis of a „psychosomatic illness” without any further testing being done.
As I said in this article before: you cannot just give the diagnosis of a psychosomatic disorder without doing any psychological testing.
Of course, a doctor can express a suspicion of a psychosomatic disorder and refer the patient to further psychological testing to confirm this suspicion. But giving a diagnosis without trying to confirm it is not the way to go, it’s actually quite unprofessional.
Some doctors see in the chart, that a patient has a history of mental illness, for example depression, and they immediately see that as proof, that the symptoms must be caused by this. But here’s the thing: mentally ill people can have physical illnesses too!
I know many people who have a diagnosed mental illness and when they complained about something like abdominal pain, their doctor would immediately say that it must be psychosomatic. Then, when they insisted on getting tests, it turned out to be indeed an organic problem, not a psychological one.
And also, even when there is valid suspicion of symptoms being caused by psychological factors: it is still important to check, if the symptoms could be caused by something physical, at least just to rule it out and make sure, that organically everything is fine. When a patient complains about physical symptoms and no tests are being run, it just seems lazy and wrong.
Also, something that often occurs, is when patients describe side effects from a medication that they’re taking and the doctor claims, that these side effects cannot be caused by this medication and that this cannot be. But the thing is: every body is different and medications function differently in every body. Especially when there is more than one medication involved, side effects can occur that are more rare.
Doctors are always trained to find the most obvious solution and not to focus on rare cases (“it’s probably a horse, not a zebra!”) but sometimes rare cases can happen! Rare does not mean impossible!
When a patient describes a certain symptom and the doctor answers with “this cannot be”, do they think the symptom will automatically go away? It just doesn’t make any sense.
What if the tests come back negative?
Nearly everyone who has a chronic condition has probably experienced this before: you see a physician, they run some tests and they all come back negative. “There is nothing wrong with you, you are in perfect health”, they might say and send you home. Or maybe they’ll tell you to see a therapist because to them, this is proof enough that the symptoms can only be caused by psychological factors.
You can imagine that this is an incredibly frustrating and confusing experience. You know that you are experiencing symptoms, that there is something wrong with you, yet the results are all normal. But the symptoms are still here!
A lack of results in a test doesn’t mean that there is nothing wrong. It means, that the tests that have been done have not been able to show, what is wrong.
Negative test results don’t mean that the patient isn’t actually experiencing the symptoms that they are describing – it means, that the right answer hasn’t been found yet and further testing needs to be done, or they need to be referred to a specialist.
I know many cases of people who had normal test results in all standard tests, and when referred to a specialist, there was indeed something found that would explain their symptoms! Sometimes all it needs is a closer look.
Talking about psychosomatic illnesses, there is something I want to make clear:
Even if the symptoms turn out to be caused by psychological factors – this does not mean that they are not there, nor does it mean that the patients are faking anything. People who experience psychosomatic pain are very much in pain! It doesn’t mean the pain is any less serious. It means, that those who are affected are suffering and in need of support.
And if that is the case, it should be handled with sensitivity and empathy, and not by being grumpy and dismissive towards the patient.
What is the harm in medical gaslighting?
You can imagine, that all of these experiences can be exhausting, confusing, frustrating and sometimes even traumatizing. Being in a situation where you are in need of help, and no help is given by the person who is supposed to do that, is like a slap in the face. You would leave feeling left alone and helpless.
As a result of medical gaslighting, patients often feel that they are not being taken seriously, that they are not being understood and some even start to question their own reality. “Maybe it is really all in my head?” is certainly something I’ve asked myself before.
This can lead to people needing to see doctor after doctor, taking years to find the right diagnosis, when early diagnosis and treatment can be crucial.
Some people describe that it felt humiliating and even traumatizing, especially when it has happened on multiple occasions. Some experiences are so bad, that people got ridiculed or even yelled at by doctors. Understandably, as a result some people develop anxiety about getting medical care and they start avoiding going to the doctors whenever possible - Which may further lead to conditions being undetected or untreated.
What can you do if you experience medical gaslighting?
1- Do not see the doctor again if possible
If this happened in an ambulatory setting, you can choose to not see that doctor again and instead turn to someone who is more professional and more respectful. Either directly or indirectly through your insurance – you pay the doctor and they should be there to help you. If they don’t, there is no need to give them your time again. Of course, in hospitals this may be a bit more difficult, but you can try to ask for another doctor, or:
2- Make a complaint
If the occurrence was really bad, you have a right to speak out against it. There are ways to complain about a medical professional, for example via the medical board. If they work in a hospital, they are employed by someone, and if the employer gets complaints they will need to react.
3- Talk about it
These experiences can be incredibly frustrating and even traumatizing. You are allowed to speak up about it and you are allowed to seek help if you need to. It is not a sign of weakness if you need support.
I have talked to my therapist about this before and it certainly helped. It made me realize, that this had nothing to do with me as a person, but with the person who did it. The mistake was on their part, not mine. And if it would have been someone else in my situation, it’s likely that it would have happened to them too.
While these experiences are certainly horrible, there is a way for us to learn to distance ourselves from them and learn, that it had nothing to do with us.
Also, talking to others who have made the experience before can be very helpful too in learning that you are not alone in this, and that it certainly had nothing to do with you as a person! It can be helpful to learn, how other people deal with situations like this.
4- Raise Awareness
Talking about it with other people is already the first step to this. Many people, especially those who are healthy and able bodied who have never made such experiences before, have no clue that such things are even happening.
Many medical professionals might not even be aware that that is a thing that their colleagues or even they themselves are doing. By talking about this issue, we can make clear how important it is that medical staff are aware of the importance of this, and that treating patients that way can have very negative, long term consequences.
Tip: when a doctor refuses to run a test, ask for this to be noted in your chart.
Many people have reported, that when they made this request, the doctor returned offering to do the test after all!
While it’s sad that strategies like this are even necessary, it’s good to have them in the back of your head in case you ever need them.
Doctors are humans, they cannot know everything. When having this conversation, we also cannot forget to consider the working conditions many healthcare professionals are facing. Many of them have to work ridiculous hours, and they experience horrible things too. It’s not an easy job by any means. It is understandable, that many healthcare workers are probably overwhelmed and have to develop a “thick skin”. But what cannot happen is that they let out their frustrations on their patients. What needs to happen, is that they get support in form of supervision, and proper training to really prepare them for situations like this.
For example: Instead of insisting on their suspicion, it would be more helpful if they refer the patient to someone else, who is more specialized. Many doctors seem to be afraid to admit when they don’t know something. I don’t know why that is, but maybe it is because it’s almost expected of doctors to be the “gods in white” who have all the answers. Of course, this is unrealistic and creates a lot of pressure.
As a patient, I am not disappointed if a doctor says “I don’t know this, but I will look into this and see if I can find someone, who is specialized in the field, who may be more equipped to help you”. I am however disappointed if a doctor says something like “You are young and healthy and there’s nothing wrong with you” when obviously, there is.
Also: many hospitals are instructed to cut costs and save expenses, and running tests can be quite expensive. But the thing is: that is not the fault of the patients and they should not be the ones to suffer from cost-cutting.
We cannot forget, that one important factor in successful recovery, is a good relationship between doctor and patient: a relationship that is built on trust and respect on both sides. It is important to make the patient feel that they can be honest about everything, and that they are comfortable in sharing their experiences. Only then can the treatment be effective. You can gain a lot by treating your patients with respect and dignity. They will feel taken seriously, understood and this will help the healing process immensely.
Have you experienced medical gaslighting before? How did it make you feel and what would you wish from a doctor’s visit?
Feel free to let me know in the comments or find me on social media here: @rea.strawhill
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With love, Rea