Case study
Dear Prof G,
Whenever I see my neurologist, he seems to fob me off as if I don’t have any problem. He disagrees with me when I tell him that my MS is getting worse. He tells me that I can’t be getting worse as my MRI is stable and my neuro exam is unchanged. He doesn’t believe me when I tell him that I am more forgetful and that my fatigue is affecting the quality of my work. Is there anything I can do about this?
Prof G’s opinion
What you are experiencing is quite common. Doctors have a long history of ignoring particular symptoms and/or complaints. You only have to look at case studies from the medicolegal sector to realise how big this problem is. In multiple sclerosis, it tends to affect the so-called hidden symptoms (fatigue, sexual dysfunction, anxiety, depression, etc.), MS-related problems that are difficult to treat (e.g. fatigue), or problems that have no treatments available at present (e.g. smouldering MS).
My main motivation for starting and maintaining MS-Selfie is to empower you with information to counteract such experiences. I suggest you read ‘Getting Worse, 2-Jul-2021’ and ‘Why am I so fatigued, 9-Aug-2021’, which may explain your current problems and help you come to terms with them. Other relevant newsletters are:
You are welcome to print out these newsletters and send them to your neurologist or at least arm yourself with the information for your next consultation. Preparing a short list of targeted questions based on the newsletters above may also work. The nuclear option is to move to another neurologist who will listen to you and take your complaints seriously.
Medical gaslighting
What you are experiencing is now being referred to as medical gaslighting. Medical gaslighting is:
Having your symptoms or concerns be dismissed or ignored without cause.
Feeling as if your healthcare provider is blaming you.
Your symptoms are written off as being normal without explanation.
The term gaslighting comes from the 1944 film Gaslight starring Ingrid Bergman. The movie tells a story of a man who manipulates his wife to such an extent that she begins to doubt her own sanity. Since then, the term gaslighting has been used to describe emotional abuse that makes someone question their version of reality. People are beginning to share their personal experiences of medical gaslighting on social media with the hashtag #medicalgaslighting.
This week’s BMJ covers medical gaslighting and suggests women are more likely to suffer from gaslighting, particularly with ‘health problems such as endometriosis, fibromyalgia, and irritable bowel syndrome’. Worryingly the article states ‘when compared with men, women face longer waits to be given a diagnosis of cancer or heart disease’. The article goes on to imply that medical gaslighting is becoming more common and the term has been ‘used widely in connection with long COVID, particularly early on in the pandemic; with some patients who were still experiencing symptoms months after infection with SARS-CoV-2 thought that they were not treated seriously, or investigated fully’. Do you relate to this? Have you experienced medical gaslighting?
Medical Gaslighting Survey
I would be interested to hear how common medical gaslighting is and whether women with MS have experienced it more commonly than men with MS. The following is a short survey on the topic that will take you about 2 mins to complete. Your help with this would be greatly appreciated.
Click here to complete the medical gaslighting survey in MS
Thank you
You may find these two New York Times articles and the comments interesting:
Subscriptions and donations
Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite currently in development. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription please subscribe. For active paying subscribers, thank you; your contribution is much appreciated.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
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