A few weeks ago a stranger messaged me on Instagram to send me abusive and frankly x-rated messages; the most coherent of which was that in his opinion I portray an "innacurate depiction of living with chronic illness". The man had a picture of his horse as his avatar so naturally I replied in a mature and succinct manner, by insulting his hooves and mane and saying I'll have him turned into glue. I'm 35.
Before it descended into horse-bashing and threats of making him into Lasagne, i did however query why he thought that i was somehow rose-tinting life with an incurable illness. He advised that i only post the "good times" and that i'm always "looking well" in my photos. Well first off, THANK-YOU for saying i look well! and also are you single? Secondly, if you think posting pictures of my scars from life-saving abdominal surgery, or my ribs showing from losing over a stone in a fortnigh, or me shakily holding the needle i'm about to pierce into my milky-white flesh are attractive, then please immediately Google the number of a qualified therapist in your area.
I disagree with this horse-man (Centaur?) for many reasons; but mainly because I am always concious of how what i show of my life might be portrayed. I am concious, for example, of not frightening recently diagnosed patients with graphic imagery that might terrify them. I know it did for me. I am concious of reminding people outwith chronic illness that a "good time" is generally swiftly followed by bed-based consequences. I am concious of showing the world that despite it often being difficult, i am able to do a lot of the things i want to do alongside my illness. I know i definately needed to hear that following my diagnosis.
When i am met with Centaurs like this one, berating me for what i should and shouldnt do, i feel disheratened. I consider what the point of it all is. Not in the philosophical sense i should clarify; i certainly wont be ending my life on the opinions of someone who cant even put their own 'lucky' shoes on by themselves. I simply mean i question what is the point of sharing my 'journey' (YUK) with the world is. And i suppose it comes back to the reason i wrote my book. (Go Your Crohn Way, available from all good book stores and apparently some stables..)
I write and i post silly and not so silly snapshots of my life because my life is not 'one thing'. I have chronic illnesses that greatly affect my life, but they are not all i am.
I know that when i was diagnosed, the absolute last thing i wanted to see was what a disease can do to someones physical and mental health. I wanted to see a light at the end of my colon. But instead i was met with all the myriad of ways in which my body would be decimated, the things i would no longer have the strength or physicality to do and the ways in which my life would change for the worse. I was repeatedly told by doctors that i would still be able to do x y and z, but their accompanying facial expressions said otherwise.
So when i adapted to my condition in my own way and began to dip my diasesed toes back into 'life' as i once knew it, i found it was all still there waiting for me. I found the love that my friends and family had for me was still there, and it was poured over me like glistening sugar-cubes (just trying to keep it relevant for my Centaur friend).
I found that although i'd often have to push through pain and doubt and fear to achieve the things i wanted to, that they were still attainable. All things i would have loved to have perhaps visual and written evidence of when i was at my lowest ebb. So you see, my glossy-maned friend, i portray life with chronic illness as i know it; because i live my life with chronic illness. Some of that is spent in bed and maybe one day some of it will be spent riding someone like you.
(FYI still on the horse analogy here: i am in a loving and committed long term relationship). x