Had I just been a victim of medical gaslighting as a woman seen by a male doctor? It was the thought that whizzed through my mind as I almost stumbled out of the consulting room trying not to cry and headed straight to the reception desk to ask to see a different, trusted, doctor.
Why the question? Well it can often be confusing and complex, and perhaps even unclear. How we are treated by a doctor can be bound up in medical language, as well as looks, raised eyebrows, silences even, that all convey something, but we aren't always sure what. Was it a gendered response? One bound up in power-relations? Or was I being over-sensitive? One thing I knew for sure was that it wasn't the latter . . .
What is medical gaslighting?
As described by health.com, '"Gaslighting" happens when one person tries to convince another to second-guess their instincts and doubt their perception that something is real. Medical gaslighting happens when health-care professionals downplay or blow off symptoms you know you're feeling and instead try to convince you they're caused by something else—or even that you're imagining them'.
Jo of A Journey through the Fog cites the following as some examples of gaslighting statements:
- Minimising debilitating or dangerous symptoms – “Your pain can’t be that bad“
- Blaming symptoms on mental illness – “It’s all in your head”
- Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear“
- Refusing to order important tests or imaging work. – “I know you don’t have “xyz”, I do not need an MRI to tell me this. I know how to do my job“
- Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?”
I doubt there are any official figures of its prevalence, and if there are I can't locate them, but those in the chronic illness community certainly know how common it is. Instagram Twitter, Facebook and more are filled with stories of such behaviour and its traumatic impact. It runs worryingly deep through the medical system. So much so, that often patients enter an appointment EXPECTING not to be believed. We anticipate that we will have to fight to be heard, and treated accordingly.
A personal experience
New symptoms always bring a degree of anxiety, at least for most of us. The realisation we need to see a doctor, the horrible tick of the clock in the waiting room and then the consultation itself. Some doctors are fantastic, truly brilliant, kind and empathetic. Others not so much.
I went to my usual doctor about an issue, and he suggested I seek a second opinion in case he had missed something. I respect that suggestion, it shows that he understands that no doctor is fallible. Ego was left at the door, and he put my care first to check the issues.
So I made an appointment with the head GP of my doctor's surgery. It began well. Friendly, polite, as it should be. Then something went awry. I spoke of the issue and he didn't examine me. Instead, he told me he couldn't see a problem. I pointed out that maybe he wouldn't be able to visually see it, but he could feel it. I needed a physical examination, not a visual one.
It spiralled quickly. He refused, but without actually saying no. I got 'looks', contemptuous remarks and he spoke down to me. When I said I could complain about his behaviour he sarcastically said that was my right and to go right ahead.
How can we know if a situation was one of medical gaslighting?
In hindsight, it isn't difficult to pinpoint moments of medical gaslighting in that appointment but at the time it felt hazy and uncertain. I knew that he was downplaying, refusing even, that I had an issue. He said he couldn't see it. Refused to examine me. Except he didn't outright say no. He just didn't, wouldn't do it. I got silence when I said that is what needed to be done.
Gaslighting can be obvious at times. It can be an outright refusal to acknowledge the symptom the patients describes to a doctor. Or a downplaying of the severity or frequency of symptoms. It can be suggesting that the patient is exaggerating, often said in careful words so as not to actually use the words 'exaggerating' or 'making it up'.
Other times it can be more hard to identify. Communication isn't just through spoken words. It can be a condescending sigh, a raised eyebrow, a silence after a question the patient asks. Those forms of communication aren't noted on our medical records, aren't recorded in any way. If raised, perhaps it will be said the patient was mistaken. After all, it may be said, such gestures lack concrete meaning and are subjective in their interpretation by another.
I feel as though I am going to use the words 'complex' and 'challenging' a great deal in this post. Yet medical gaslighting often is. It's not clear-cut at times, or certainly not in a way that could be proven. I think the patient usually knows though. They sense it, feel it, get understandably angry by it.
The 'it's all in your head' line
For those in the chronic illness community, the sheer number of patients who are told their symptoms are 'just' anxiety won't be a surprise.* Dysautonomia International describes that 'prior to being diagnosed with PoTS, 59% of patients were told by a doctor that their symptoms were "all in your head"'. In my experience, the same was true for vestibular migraine. Others have said they had the same experience to me in regards to endometriosis.
This is also an area of complexity. Of course, many people do have anxiety. It is a challenging condition that requires medical support and treatment. It certainly isn't a lifestyle choice or a trendy 'thing to have', as some in society seem to believe.
When it comes to a diagnosis of a chronic condition, the link (or not) to anxiety can be a diagnostic challenge. Does the patient have anxiety, or another condition with similar symptoms? A racing heart, dizziness, feeling faint, nausea and more can be symptoms of anxiety, but equally they can be symptoms of PoTS, for example.
When such symptoms are described by the patient it is for the doctor to undertake a thorough medical history, ask questions, perhaps conduct a physical examination depending upon symptoms, and refer for tests if required (which it often is). Falling back on 'it's probably anxiety' without due regard for other possibilities is lazy medical care.
And of course, chronic illness conditions and anxiety are further complicated by cause and effect. I felt as though I may as well bash my head against a consulting room wall on one occasion when I said, over and over, that it was the symptoms of vestibular migraine that were making me anxious, not that anxiety was causing the symptoms. I walked out the room knowing that I hadn't won that 'fight', and angry that my experience had been side-lined for a pre-conceived view of the relationship between chronic illness and anxiety.
Gender and medical gaslighting
Gender and medical gaslighting is again complex. It's hard to prove many times. I have been the subject of gaslighting from both male and female doctors. The latter always grates on me more if I am honest. Shouldn't women support women, is often my thought. Where's the solidarity? Don't they know the history of women and medicine? Don't they want to help make a societal shift for good?
The narrative of the anxious female has pervaded history, notably in the diagnosis of 'female hysteria' in the 18th and 19th Centuries. Women were told their 'wandering wombs' were to blame, and they were understood to be predisposed to mental and behavioural disorders.
While such a diagnosis no longer exists (thankfully!), much has been said about doctors too quickly moving to a diagnosis of anxiety for women displaying certain symptoms in the present day. I've had the sentence 'well women of your age have a high prevalence of anxiety' said to me on a number of occasions. I doubt male patients get the sentence 'well men of your age have a high prevalence of anxiety' uttered to them . . . If they do, I wonder if terms such as 'stress' or 'pressure' are used instead.
So in turn, presumably, men are more likely to have their symptoms better considered. Perhaps more tests are undertaken, other conditions considered.
That different approach to a diagnosis is profoundly gendered. In the case of gendered medical gaslighting, a doctor doesn't take symptoms as the key issue, and the myriad potential causes of them, as the subject of investigation. Instead they link female gender to health in a manner that quickly sees anxiety (or other mental health condition) as the issue without regard for other causes.
I think we can agree that this often fails to correctly diagnose the female patient. It also means that female patients wait longer for a diagnosis, as was reported by subjects in a study on the demographics of patients living with PoTS by Shaw et al. Those female patients go back and forth to doctors, often for years. They hope to sit in front of a doctor who listens, properly, and puts their symptoms at the centre of investigations, not move quickly from an identification of their gender to a diagnosis of anxiety.
What is the impact on the patient?
Medical gaslighting delays a diagnosis, simply put. That delay then of course delays appropriate treatment. It leaves the patient in pain, or with other symptoms longer than necessary. It may mean that their health spirals into greater issues, such as chronic pain, potentially in an irreversible way.
The impact of medical gaslighting also has a psychological element. It is traumatic not to be believed in your pain. We go to doctors for help, for care, and hopefully for some empathy and kindness in treating the issue at hand. To be disrespected by the very people who are supposed to put your needs first is distressing (to put it mildly). It leads to a dis-trust of doctors at times, something that can prevent patients from seeking help for further health issues.
How can you move forward after an incident?
Being wary of doctors isn't surprising if you have experienced difficult and traumatic consultations. Personally I found it hard to see any for at least six months after one incident. Yet most of us need medical care at some point in our lives, whether for the symptoms that have been ignored or for those that may arise in the future.
1. Complain or report the incident
If you are able to report the incident then this may be helpful. It's not to say that it is easy to do so though, either emotionally or from a practical standpoint. In the UK there is the PALS service (patient advice and liaison service), which is a good place to start.
2. See a different doctor
This can be emotionally tough as you are fearful that your symptoms will be overlooked or downplayed again. Seeing a different doctor is important, although difficult.
Perhaps you can ask friends or family for their recommendations of an empathetic doctor, or if you are on social media contact people in your area for their suggestions. Personal recommendations are often very helpful.
Seeking a second opinion on symptoms is always worthwhile, and it can be a risk not to have them fully investigated, as appropriate.
3. Advocate for yourself
Also challenging at times, but advocacy can take many forms.
i. For example, at your next appointment you could take a friend or relative with you. This can help in two ways: they are another set of eyes and ears and so will be there if something inappropriate is said and, if symptoms have been seen by them, they can emphasise this to the doctor.
ii. Keeping a record of symptoms can also be helpful, as can photographs or a video if the symptoms are visible (such as a skin rash for example). Take this with you to your appointment.
iii. If another doctor has commented on the symptoms or made suggestions, take a copy of the clinic letter with you where they mention this. Often doctors don't want to go against the suggestions of a colleague.
iv. Take notes at your appointment. It's true that some doctors don't like this, but as far as I am aware there is no rule that you cannot take notes of what is being said in your appointment.
v. Self-diagnosis isn't a good move, of course. Unless you are a qualified medical doctor there can't be any certainty in a self-diagnosis, and you obviously cannot perform required tests on yourself either. Saying that however, it may be the case that you suspect you have a particular medical condition. In that circumstance you can ask your doctor for a referral to a specialist or, if funds allow, see a specialist on a private basis (this will depend on the healthcare system of your country).
*Health professionals often use the phrase 'it's probably just anxiety'. That response - the 'just' aspect of it - both downplays the experience of anxiety as a serious condition, and overlooks that the patient may have another condition.
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Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.