Patient: The True Story of a Rare Illness book cover
Having recieved my diagnosis, I did a bit of Google search, as I’m sure any curious patient does. There isn’t a huge amount of reliable information on Churg Strauss Syndrome (CSS) and much of the information can conflicting at times.
I first turn to the ever sort-of reliable Wikipedia; first stop for all my knowledge needs. It was there I found out about a book by a musician called Ben Watt, who had been diagnosed with CSS at a relatively young age of 29, considering it “traditionally” affects people aged 40-50.
Having just started at university, I was able to find one lowly copy of the book down in the depths of the library, and according to the stamps in the front, having been the first person to retrieve it in quite some time.
It is in summary about Ben Watt’s experience with CSS right from diagnosis to eventual “cure”. His experience begins as presenting with chest pain and from there baffled doctors try and find the cause. For over two months he was in hospital, experiencing multiple operations to try and remove sections of dead bowel, which had been destroyed by his own immune system as part of CSS. He does infact, in the end, have quite a significant portion of small bowel removed which dramatically affects his diet.
On top of his recounting of his medical traumas and procedures, Watt also talks of the way it affected those around him; the often forgotten relatives who suffer along with their sick loved ones. Something that is all too clear to me, having seen the affects that illness – not always my own – has affected my family. He recounts memories of better days and reminds the reader that patients are people, not just walking examples of diseases seen in textbooks. Something, I feel a lot of medical staff, not just doctors, should be reminded of.
The book was both facinating and informative and I would highly recommend it not only to CSS sufferers but medical students as a whole. If you are genuinely trying to connect with your patients on a emotional level, then this book will give you a genuine insight into how they experience illness.
Current weight: 9 st 6 (132 pounds)
Weight lost so far: 4 pounds
BMI: 25.8
Weight still to lose: 13 pounds by April
Patient Reflections 