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.
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).
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.
