Medical gaslighting: a discussion with Rachel Horne, UK journalist and MS Advocate

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Jodi: Hi everyone, welcome to the MS Boost, today we're speaking with Rachel Horne, a UK based journalist and woman who is a powerhouse for improving the treatment and management of people with MS. So welcome, Rachel. We're going to get right into it, thank you so much for joining us today. I have been following the work that you've been doing, which is, amazing work.

But one of the things that really interested me was your article recently on medical gaslighting. So, tell me a little bit more about how that came, how you came to write about that, why this topic's important to you, and where this started?

Rachel: Well, first of all, thank you very much for having me on. It's an absolute pleasure and you’re a hero to me. trust me, for all the work you've done with people with MS. I'll tell you a little bit about medical gaslighting. As you know, I was diagnosed with MS 14 years ago, and as a journalist, and as someone with MS, I spend an awful lot of time chatting to people with the disease.

And often we do discuss the diagnosis story that comes up again and again. And what I did find, which will come up again and again, was how long it took, and this is particularly women, how long it took to get a formal clinical diagnosis of MS from the beginnings since when they would go to their healthcare professional talking about the individual, the initial symptoms they had.

And often I've heard some real horror stories about the boundaries and about the challenges and sometimes it took up to decades before they were formally told they have this disease. So that was one thing that certainly got me interested and also there was a, also a bit of a personal side. I didn't have any problems getting diagnosed because my first relapse was so severe, and I ended up in hospital.

So it was, it was a quick diagnosis, but what happens was fast forward a couple of years and I was under the treatment of a neurologist and I was on a fairly weak disease modifying therapy. And I did know that my MS was getting worse, fatigue, troubles with walking and balance problems. So, I lobbied to be put on a stronger DMT.

And that's when I think I did, I certainly did experience medical gaslighting. I found that my concerns were either brushed aside or when I was describing the symptoms, they were interrupted or very much fobbed off. And various suggestions would be, get some more exercise, try meditation, or maybe you need to go on an antidepressant.

So, I realised that the situation between myself and my neurologist was certainly not a partnership and after a while I stopped trying to be a good patient and realised that in fact it would be a lot more better for me to find another neurologist where we'd have more of an equal relationship and that's what I ended up doing.

It wasn't something I wanted to do but it's something I think eventually I realised that I was in charge of my own health. So, I think the combination of that, and I also think another thing that triggered it was when I was approached by a medical professional who said, I think it's time we do an article about this.

Jodi: Yeah, it rang so true, certainly in my clinical experience as well. We heard that story, again and again, about that delay to diagnosis, and the time that it took. More women, definitely, but there was also men who I had too, who was sort of, almost convinced with, almost the medical team that they were seeing, almost convinced them that it was depression and not something else.

So it was like that, having to talk to yourself and say, no, this is real to me. So, yes, I certainly heard that story and I thought it was interesting that you used that term “Stop being a good patient” and how we define that good patient as someone who kind of almost doesn't trust themselves, which sort of feeds, I think, into what my understanding of what medical gaslighting is.

But I would love to hear from you through the study, what you discovered and through the article that you published and the work you did with that neurologist writing that article, what medical gaslighting actually means, and what things you learnt when doing that article?

Rachel: The problem I think when I finally came to write the article was the absolute huge size of it. And I remember on social media sort of asking anybody if they'd been the victim or think they'd experienced medical gaslighting and I was involved in this huge deluge of responses. So I ended up with the definition, I ended up taking it from essentially from the BMJ, from the British Medical Journal, and this is what I kind of came up with.

It's a term for when health care professionals. Downplay, dismiss, minimise or ignore patient symptoms or blame their concerns on psychological factors rather than having a physical cause. Or I think as we put it more bluntly, tell patients that it's all in their head. And as a result, I think, and I'm sure we'll discuss it at some point, but I think it's very much, it's been around for a long, long time, you know, probably since as long as medicine's been around. But I think there is now much more of a growing awareness of it.

I think people who've experienced it are calling it out a lot more often, and I don't think it's an issue that's, you know, sadly can be solved overnight. I think it's a huge part of a huge, it's a big systemic change, but I think I'm trying to be, you know, I am being positive here, but I do think the growing awareness of it is sort of the first step in approaching it, looking to ways that we can possibly shift it.

Jess: Rachel, you mentioned that a lot of people experiencing this and the delay to diagnosis, but did your findings, or things that you were hearing show that people could experience this at any point in their journey with MS?

Rachel: Absolutely. And I think the most common, I'd be very interested to hear what Jodi finds, you know, during her career and by listening to various patients, I do think it does seem to be much more common at diagnosis.

Only because I think we've got the double whammy, with the very fact that I think, as Jodi pointed out, medical gaslighting can happen to absolutely everyone. I think it does tend, or studies have shown it does tend to happen more to women, or people of colour, or people from an LGBTQ background.

But I do think that the reason, you know, I'm mentioning that it does seem to happen more in the lead up to a final diagnosis, it's because MS does happen much more, or is much more diagnosed in women, and we know that they are affected more often. And also, and again, MS is a mysterious autoimmune disease where there's no set biomarker, there's no set blood test, and there's no set way, you know, scientists, researchers, clinicians can test for MS.

And I think it's very much, isn't it, a process of elimination, and also it has such a huge variety of symptoms, doesn't it? Somebody can walk in with just a problem with fatigue, or visual problems, or spasticity, or a headache, and also I think the very fact that those symptoms over time, very typically, especially at the beginning, wax and wane.

So, a patient may show up to a doctor complaining of a dragging foot, and then within a couple of days it's resolved. So, on one hand, I do get why it's so tricky and why the default is so easy to say, look, it is a bit in your head, you know, you've been here several times, and I can't find, and also that some of the other symptoms are invisible.

I mean, how do you measure pain? I mean, a tumour you can measure, can't you? But pain or fatigue or tingling, that's really tough.

Jodi: Yeah, I think it's true that it's particularly pronounced in diagnosis and the impact is so significant. So the impact when someone tells you their story is, wow, this is what happened to me and it was, you know, I think Selma Blair wrote about it in her book as well too.

Just saying it was, for her, it was like something like 10 or 15 years before someone actually paid attention to her symptoms. But I also found that when people went to medical practitioners who didn't have an awareness of MS, it happened more as well too. And lots of GPs only have one person with MS so they're not going to know what the symptoms look like.

I think Rachel, you're really right when you say it's a systemic issue and it's deeply rooted in the imbalance of power structures that occur in the medical. And I agree that there's a huge change occurring in that recognition of that the relationship with the patient and, and a neurologist or a medical practitioner, is and should be, a partnership, but still even the person with the most, the highest degree of self-efficacy and confidence, it's actually really hard to be a confident person because you're with someone who's, it's just that traditional power imbalance.

And I think that really feeds into the concepts of this idea of sort of dismissing the symptoms.

But from my understanding with the medical gaslighting, and I was astonished that 88% of people reported that they'd experienced it in your article, that's just enormous amount of people who had at some point experienced some form of medical gaslighting.

I found that really it's that sense of, that I have this symptom, but it's also somehow, I've convinced myself that it is my fault, or that it is something that I'm telling myself that it's not really, oh, it's not real, and you start to even lose this track of sense of your own reality and your own truth, and I think that's something that really came through in your article, Rachel, it's not just ignoring, but it's also that sense of convincing that actually you've made it all up yourself and that's what it is.

And I think, one thing I found as women went into menopause as well too, there's just this huge, and it's a huge sort of, “is it MS? Is it menopause?”, and then people would just say, “it's just me”. Did you sort of find that too, Rachel?

Rachel: I wonder why you're asking me about the menopause! [laughing]. No, but I absolutely, I very much agree with you. I was 43 when I was diagnosed and I think the MS diagnosis came first, but then it was followed [by menopause].

And I think the problem is that, you know, there's a couple of parts to answer to this question. I think the answer was that certainly for me, there was a number of symptoms I got, which I'm convinced were MS, because I think unfortunately when you do get MS, you just blame everything on MS because it's kind of convenient.

But it certainly was an increase in urinary tract infections, loss of interest, you know, libido, and so I did go back to my neurologist and said, look, all these things are going on, I'm sure my MS is getting worse. And I think I was sort of hoping that an alarm bell, looking back, should have rung and think well hold on, this woman's in her late 40s she's probably going through perimenopause, and in the end, and also I think a lot of doctors, MS doctors, we almost want them to be specialists in almost absolutely everything, don't we?

So, I think they probably do not have or have the faith that they are experts in menopause. So, I ended up going to my gynaecologist obstetrician and she said, “look, I think this is definitely menopausal” and gave me some treatments, some HRT, and also, she suggests very strongly that I get a bone density exam, so things like that.

But so it's very much a question, I think, which you talked about earlier, being your own advocate, and sometimes that means a lot of extra work, and you're dragging along studies and things like that, having to find the answers, and it might be, you know, care sometimes is very much in silos, isn't it?

And also, I do think there's another reason, and I think it's something which there is more of a growing awareness, and I'm sure it's probably the same in Australia, is that there's so little known about women's health compared to male health. And a lot of times we're seen, I think in all areas, as small men with boobs and tubes.

So, when I think a woman with MS does come to her neurologist and says, “I'm having this”, I think he ought, you know, I shouldn't say he, but I think sometimes there's a tendency to kind of throw up their arms and go, “what do I do with this? I'm not familiar with this.” I do hope there'll be more research and more overlapping so that younger women don't have to go through this.

Jess: Absolutely. And one thing that stood out to me, you were talking about right at the start is no longer being the good patient. And it sounded like you had to advocate and push to have a change in your medication when you felt that it wasn't working for you. So, how did you go about standing up for yourself and how can people protect themselves against medical gaslighting?

Rachel: Yeah, I do think, unfortunately, we do in this day and age have to become health advocates for ourselves. And it does take practice, I think, and again, I am talking in generalisations here, but I think women do tend to be told they should be good patients, they should listen to the doctor who's got years of experience and wisdom, and you know, in old days, sitting behind a desk with their white coat on, and you don't want to get marked down as a troublemaker because because you don't want to be. You want to have that equal partnership.

So I did find that with medical gaslighting, sometimes you're aware of it, but it's so subtle. Sometimes you just walk out of the doctor's office feeling a little bit vague, a little bit dissatisfied. So I did find there were some various red flags that I think, patients should be aware of just in case.

And one of them was you go into your appointment and your healthcare professional constantly interrupts you, rushes you, talks over you, minimises or downplays your symptoms, or even refuses to discuss them. And taking on from that is also, they will refuse to order further tests, say lab work or MRIs, and also, they will sometimes make condescending or belittling remarks.

And on some occasions, they will also link it to blame it on a mental illness, that it's not a physical cause, it's a mental cause. And I've also heard, you know, horror stories, and I think, Jodi, you certainly mentioned Selma Blair, and I think some of the things she was told over the years in her search to get an MS diagnosis was it’s hormones, it’s anxiety, it's malnutrition, and one set of advice was actually to get herself a boyfriend! So, I think those are definite red flags if you see them coming, please be aware of them.

There was also some advice given for people if they suspect they're being gaslighted and what to do, which I thought was quite helpful. And it was prepare for your medical visits. Perhaps keep a journal, list your symptoms, and when you're listing your symptoms, say it how it impacts you. Don't just say, look, I feel really tired. Say, I feel tired, last month I used to be able to come home from work and do X, Y, Z, now I'm coming home, and I can't do that anymore.

Push back. Be less of a good patient. It doesn't mean you need to be rude, but just maybe not accepting everything that comes out of the doctor's mouth.

One thing I found very useful is to bring along a partner for support, that can be there for encouraging, and also can say as an advocate and act on your behalf and say look, she has been feeling rundown or I did notice that she did fall and stumble.

There's something slightly controversial is also possibly recording it. I know that some doctors, I think you obviously have to ask permission, but some doctors will let you record the clinical visit, and also I think really important when you're leaving the office pin down the next steps. You know, what's going to happen next? What's the appointments for some lab work? What are we going to do? And if those don't work, perhaps consider getting a second opinion or perhaps you can switch doctors and, and to try and get the help you need. Because at the end of the day, you know yourself, you know your body best and you have to be your own health advocate because it's your health and it's your future.

Jodi: I think that tip about bringing a partner, or the right friend is really valuable, because if you bring the wrong friend, it's not that valuable. But if you bring your support person who is the person who is able to, I found sometimes people would bring someone who totally dominated the conversation, it ended up being a conversation with the neurologist and them, and not the person themselves as well too.

I feel like I said a thousand times to prepare for appointments, but it makes such a difference if you thought about what you want to say and what your top three things are that you want to say, rather than a huge list, you know, time is precious always. So what's the top three things?

One of the things that I also found is that even as a nurse myself, because I noticed that, in your study, 33%of people felt the MS nurses did some medical gaslighting as well too. And I reflected on that and thought, it's really hard to be a healthcare professional and not want to solve the problem, and with MS, we can't solve problems. But that doesn't mean that it shouldn't be validated and put it in as part of the picture.

And so, I had to really consciously tell myself, I don't have to be a nurse who solves problems, and I identified with that too and said, it's hard. And you tend to be, want to be, a little bit dismissive if you just can't do anything like when you've done everything you can with this person's pain and you think we've tried everything, you just want to kind of put it away. And so I think there's usefulness in acknowledging that up front with your neurologist, that I don't expect you to solve this, but I need you to hear it and that's okay, too.

Rachel: No, I think, I think you raise a really good point about looking at it from the other side, because it's so easy to say medical gaslighting, let's dump on healthcare professionals.

But let's face it, MS is an incredibly difficult disease. We don't have the magic wand, do we? I mean, let's hope one day we do and have the golden ticket and you know, MS disappears.

And also, it's such a vast and huge and complex disease that you obviously want to solve it. I, as a patient, want to walk in to see you and say, “I've got this issue, how do you solve it? Make it better”, and you can't give me a band aid, and it doesn't work that way as much as I’d like it.

I do think, yes, medical gaslighting is linked to power dynamic, but I do think most of it is not intentional. I mean, we do tend to make snap judgments, and so I think it's just, as I said, an awareness of it, and not so easy to put things in black and white and shades of grey.

I do think it's such a wide range, we all react differently, don't we, to circumstances and what's around us. And also, with MS, sometimes health care professionals get the diagnosis wrong, so it is incredibly difficult, but I think at least we bring attention to it, and I do think there are steps being made to focus on it and to make the diagnosis process quicker.

Jodi: yeah, I think that you're right. It's not a black and white issue, and I totally agree. In most cases, it's not intentional. It's come from a traditional power structure that's been set up and just is. And, and that's not necessarily the doctor's fault too, that is just how it is. And the other thing is that, that women really weren't involved in research for a very long time.

So, there is this huge gap in knowledge which sort of feeds into that. The challenge of trying to actually solve the problem and do something about it, which is what, like you said, that's what everybody wants to have. But at the same time, I did see many circumstances where people who upped the diagnosis or even who went to see their GP during the diagnosis, did experience medical gaslighting, and it's incredibly disempowering, and incredibly difficult to self-manage and really, once that spiral started of self-doubt as well too, I found that, people would doubt themselves forever more.

And so that just meant that they often kind of buried their head in the sand too and said, “Oh well, you know, no one's going to hear what I'm saying here”, and that meant that things got missed that could have been done.

Rachel: Yes, and you probably see it more often just saying about, what's the difference between being ignored and also being kind of half believed. It's kind of insidious and it plants a seed that you're not worth listening to or you're not to be trusted and I do think therefore you sometimes, and I wonder if you've seen this, Jodi, with some of your patients who just would withdraw, stop coming to appointments because they don't think they're ever going to get any help. Which is also very serious with a disease which is largely progressive.

Jess: It's just so interesting to hear. And you know, it's almost sad in a way it sounds like a bit of a universal experience. You know, we hear very similar stories here in Australia as to obviously, in the UK.

Jodi: Yeah, true.

Rachel: But it is quite interesting because it was funny, and this is slightly anecdotal, but I remember when Professor Gavin Giovannoni, he's one of the world MS experts, he had a patient who I actually wrote about in the article.

And he did approach me and said, “Have you ever heard of medical gaslighting?” And I said, “Yes, yes, I have”. And he said, “Has it ever happened to you?” And I said, you know, I'm kind of like, “Yeah, yeah, it's happened to me”. And he said, “Would you be able to do an article on this?” And I said, “Yes, very much.’

And I said, So, Gavin, who is not my neurologist, I said, “So, Professor Giovannoni, have you ever been medically gaslit?” And there was a long, long pause. And he said after a while, “yeah, I think when I was 16”, and I thought that kind of says it all because he's sort of my age, you know, when he was back in South Africa as a 16-year-old.

But I think when you do ask around, you do ask in a room, most people do have a medical gaslighting story. But I do wonder, perhaps it was something that was discussed perhaps at medical school. You know, don't have to spend a lot of time on it, but maybe just a bit of time saying, let's just be aware of our biases or be aware of this.

Jodi: Yeah, yeah, and I'm sure it probably is starting to get discussed more and more. I do see, I do see a change. I do see a significant change in the way that people are feeling more empowered when they come to their visits. And also, medical people, you know, engaging it more in a level of partnerships.

And certainly as a nurse, I learned all those things about myself too. And I'm sure that in a way someone could have said, “Jodi gaslighted me today, Jodi gaslighted me today.” And often it was because, there might have been something else going on in my life or I had a sense of, I can't do anything about this I don't know what to do anymore and therefore I am going to choose to just not listen and had to give myself repeat permission to say ‘I can't do anything’, and if I could go back to me as a junior nurse, I'd probably say. just tell the person I hear you, I don't know whether there's anything that we can do about this. I wish there was with all my heart. I wish there was, but the need for solutions I think drives a lot of that. I really felt, personally I really felt for me that, that need to kind of solve the problem.

It didn't make it right, but it was a driver and perhaps people understanding that also bring that to the table as well too. So I think that's really important to have that level of awareness. And even giving that medical practitioner the permission to say, it's okay, I don't expect you to solve this. But if you've got anything, that would be great, but I do think it's very important that it's heard.

Rachel: and as you said, I think MS is in some ways, and you're probably way more aware of this, it's a very emotional condition, isn't it? Because there's a lot of anger, there's a lot of sadness, there's a lot of loss in there. And I think that does sometimes comes out in patients, they desperately want a solution and there, there's no solution.

Jodi: Well, by talking about these experiences and shedding light on this topic, we really hope that it's raised some awareness today and given people some tips, and thank you Rachel, for your tips, they were incredibly valuable on how people can approach it when they are being aware of medical gaslighting and what they can do for medical gaslighting. So, we want to thank you heartfeltly for your time, Rachel, and for being on MS Boost and we're sure people got something out of this.

Rachel: Thank you very much. An absolute pleasure to be on here.

Thank you for listening to the MS Boost. Let us know, have you experienced medical gaslighting? We’d love to hear from you, get in touch to share your comments and suggestions about this episode, or for future guests and episode topics by emailing [email protected]

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