By Kathleen Nicholls, author of Go Your Crohn Way
Living as I do with Crohn’s Disease and a myriad of other chronic illnesses, it can be exhausting just getting up in the morning. Without meaning to sound melodramatic, often everything is a struggle. Life is exhausting.
So when I can I like to do things to make it easier. Better. Less ‘all-about-illness’.
For me one of those ‘things’ is writing about my life with Crohn’s. It helps me express myself when I can’t use my ‘audible voice’. I started writing about my illness after my first surgery in 2011 – I blogged on it HERE and I still do. I love the idea of having a public diary – it also helps me focus my thoughts when things feel mentally hard. But the best thing about airing my diseased laundry in public is the ability to help others.
Enter Go Your Crohn Way, my first book! Thanks to Jessica Kingsley / Singing Dragon I have been lucky enough to be granted the opportunity to turn my experiences into a fully-fledged book, aimed at helping those recently diagnosed, long-term sufferers and/or family and friends of sufferers.
I want my book to remind people that we should talk about Crohn’s and IBD. When we don’t it implies that we have something to hide; to be embarrassed about. It allows ignorance to run rampant, like a dinner party held by Donald Trump and UKIP. It causes insecurity, anxiety and confusion. When we remain mute on the subject of our illness we allow others the space to come to their own (wrong) conclusions. We are living with illnesses that massively affect our lives and should remind ourselves often, that leading ‘normal’ lives around an abnormal illness takes huge courage, humility and strength.
When I was first diagnosed there was so much information to take in it was utterly overwhelming. Everyone had their own horror story to share and none of them helped ease a worried mind. That’s why I hope my book will be an invaluable tool in helping patients to see there is life beyond their illness.
IBD is an incredibly debilitating condition which has no cure. It causes agonising symptoms at its worst and is an endless inconvenience at best. It can be ‘controlled’ and ‘managed’ but nothing more. It affects its sufferers in minor and major ways, and can floor patients at the drop of a diseased hat. But it’s taught me the resilience of my fellow ‘crohnies’ is both surprising and wonderfully unrelenting. It’s spurned me on when situations have been as hairy and rough as my legs during a Scottish Winter. It’s given me faith in myself and my future – it’s not bleak and it’s not going to be all about Crohn’s. It’s going to be as bright as I want it to be, as bright as I allow it to be. NOT as bright as my disease allows.
That’s the message I hope people take from the book.
The day after IBD Day on the 20th May, I’ll officially ‘launch’ my book with my friends, family and favourite man in existence. If Jon Hamm is unavailable, it’d be nice if my boyfriend was there too. My knees will knock once again as I try to talk in front of anyone more than my cats. It means I’ve made something that was once so negative into a sparkly positive and I can’t wait!
I truly hope you enjoy my writing; it contains my heart, soul and (remaining) guts. Go YOUR Crohn Way!
Click below to learn more, read reviews or purchase Go Your Crohn Way by Kathleen Nicholls
Dear Kathleen!
Thank you very much for your book! I started to read it when I was at a very low point of my life due to my GI chronic condition. I found a lot of validation in your book. It also helped me to accept days the way they develop. My only problem with the book is your simplification of IBS. I understand that IBD And IBS are very different. I don’t think it’s necessary to prove to you that I do not dismiss or minimize what you are going through. But I turned to your book for support, because IBS is terribly misunderstood and not taken seriously. But this condition rules my life, deprives me of many things and there is no known way to control its symptoms. I am sorry, but it’s complete BS to think that diet or change of life style leads to improvement. I am 88lbs at the age of 48, look like a skeleton and have to travel to Mayo clinic from NJ to try to get some control over my symptoms. I am very depressed and feel quite diminished. IBS in its severe forms is a totally debilitating condition.
You are writing in your book how dismissive doctors used to be before proper diagnosis was made. You hated when doctors were telling you that it was all in your head. I share the same experience and relate to your hurt 100%. As a result of my severe IBS I have frequent electrolyte issues, anemia, body aches and very little energy. By the way a few times my doctors were talking about a bag for me. And I might end up with one, if treatment in Mayo clinic fails. IBS might be a severe motility disorder, where brain-gut communication is totally off. Again, Kathleen, I really appreciate your book, the way you approach your daily experience. I don’t claim that I understand Crohn’s and I don’t want to sound wrong. I wish you to keep up good attitude and I wish you all the best. Thank you again! K.