Elke Hausmann is a salaried GP in Derby.
Sarah Ramey was 21 when she first became ill, and 17 years later this book, which is so much more than an illness memoir, was published, 10 years after she first started writing it. It was published in April 2020, which is a shame, as, because of the COVID pandemic restrictions at the time, it did not get the book launch events it should have had, likely resulting in a lack of awareness for many potential readers.
She tells us that ‘mysterious illnesses’ are complex and complicated, very individual, definitely not in the patient’s head … but in her body, and, importantly, in the culture she lives in…
This is even more unfortunate considering that the pandemic has brought about a whole new potential readership of ‘women [and men] with mysterious illnesses’ (or shall I say Long COVID). It matters that women get more of these ‘mysterious illnesses’ (for example, illnesses that don’t readily show up on any of the routine tests doctors tend to do), as is discussed in detail in the book. But men get them too, and when they do, they get a very similar reception from doctors and society as women have always done (disbelief, psychologisation, and in Sarah’s case, downright cruelty). This is not about men and women, this is about what are considered masculine attributes being seen as positive and feminine ones as negative.
Sarah was a ‘normal’, ‘healthy’ American girl and young woman before she became ill. She is the daughter of two ‘top notch’ doctors and the granddaughter of a well known endocrinologist grandmother. She was not the ‘typical woman’ to get myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) – or was she?
ME/CFS isn’t the only one of the medical conditions she developed, some of them she describes actually resulting from overt medical malpractice, her account of which is often quite shocking to read. Remarkably, her book is at times also desperately funny.
Lucky for us, due to what she describes as her ‘privileged’ position (the support of her family, also financially), she has been able to read and think deeply about her experience and she has produced a book that I would recommend to any patient with a ‘mysterious illness’ (but of course it would be unrealistic to expect that most of our patients would want to read all of the 432 pages).
A patient who feels heard and seen will feel that little bit better about herself when she leaves the consulting room …
However, I think that doctors, and particularly GPs, could gain a lot from engaging with her experience and thinking. When I did a presentation updating my GP colleagues in my practice on Long COVID and ME/CFS the other week, I was asked the question of how we can give our patients with those conditions hope, especially if they come back to us after having gone through a Long COVID clinic or a CFS service, without much improvement or an ongoing treatment plan. My answer prior to reading this book was insufficient.
I said that it was wrong to give patients false hope that they would definitely get better, when we don’t yet have the data to show that that is the case for anyone with Long COVID, and when the experience from ME/CFS is that patients can be ill for 10, 20, 30 years – some get better, some get worse, some die, as has happened again recently in the case of Maeve Boothby O’Neill which has gone to inquest to determine failures of the NHS as a system and NHS doctors in her care.1 Rather than talking, what we can do as GPs is to sit with a patient, to let them talk and to truly listen to them. A patient who feels heard and seen will feel that little bit better about herself when she leaves the consulting room, which may then make it that little bit easier for her to cope with her illness. And it’s a definite improvement from many patients reporting that a visit to their GP actually makes them feel worse.
She writes about what we might be able to do to manage the underlying pathophysiological aspects of ME/CFS …
That is all fine, but Sarah’s book has more to say on hope. There is a lot of hope in this book. While she tells us that she is not cured, she is better now – no longer bed-bound, as she had been for years (like the patients at the very severe end of the ME/CFS spectrum whom we don’t ever see in GP). She tells us that ‘mysterious illnesses’ are complex and complicated, very individual, definitely not in the patient’s head (though attention to one’s psyche can be beneficial), but in her body, and, importantly, in the culture she lives in (more on that in the book).
She makes a convincing argument for how a ‘mysteriously ill’ woman can get back on the path to recovery. This process is just as individual and complex as the illness itself. Sarah is a fan of getting the basics right; building a ‘solid foundation’: think real food, enough sleep, regular ‘exercise’ (bearing in mind that due to post exertional malaise, only the gentlest of movement for the shortest period of time may be possible, and sometimes not even that), all of which requires work from the patient. At least as important is a supportive community that, in addition to giving vital emotional support, for patients at the severe end can take over some of the burden of that work. She writes about what we might be able to do to manage the underlying pathophysiological aspects of ME/CFS including the altered immune system, endocrine system and autonomic nervous system.
Even though Sarah is not a medical doctor, she is immersed in medical culture, she has very likely read more research papers than the average doctor, and she critiques alternative medicine as much as traditional medicine (both of which have more in common than might at first be obvious; the pill popping culture of traditional medicine is the quick fix of whatever an alternative medicine practitioner promises will be the one thing that will bring a patient back to perfect health).
There is no one thing that will cure ME/CFS. Patients are often hoping for that quick fix. That is probably not going to happen. But there should be more treatments for these conditions by now. More research should have been done by now. The hope is that the event of the COVID pandemic will accelerate the discovery of tests and treatments through more funding for and more research into those illnesses which hopefully won’t be seen as ‘mysterious’ for much longer. There is also hope that with more knowledge, doctors will do better by their/our patients in the future.
Featured book: Sarah Ramey. The Lady’s Handbook for her Mysterious illness. A memoir. Fleet, 432pp, ISBN: £18.99.
Reference
1. HM Coronor for Devon, Plymouth, and Torbay. Maeve Bernadette Boothby O’Neill – Inquest, no jury. Exeter Coroner’s Court, County Hall, Exeter Devon, July-August 2024.
Featured image: Jersey shore, by Andrew Papanikitas 2024
