A couple of weeks ago I received a lovely e-mail from a young woman who also has Crohn's and reads my blog. (I hope you are reading this!) She commented that reading my story has made it easier for her to cope, and how nice it is to hear someone being honest about the disease. Apart from making me a wee bit emotional, this got me thinking as to why Crohn's, and bowel diseases in general are considered such a taboo subject? Why, in 2011 are many of us still uncomfortable discussing our rear-ends and what goes on back there?
Its very sad and depressing, as the truth is, there are many more people than you think with this disease. Infact you could be sitting next to someone with Crohn's right now, whilst you read this! OMG locate a wire brush and some Dettol quicksmart! You might catch something! This type of ignorance reminds me of my primary school days when we heard on the school grapevine that Queen legend Freddie Mercury had Aids. The word quickly spread that you were not to use the same toilet seat as someone "like him" (i.e homosexual) as you would "catch Aids", and heaven forbid actually having a smooch with one! Even at that tender age I remember thinking WTF? Before WTF was even in my vocabulary.
Again, in search of knowledge I went to the font of Crohn's knowledge that is my Twitter feed and asked my fellow Crohnies what misconceptions they have come across being Crohns sufferers. The responses were amazing, some made me laugh at the sheer ignorance of people and the things they come out with regardless of the other persons feelings. Most just made me angry, the venom in some people regarding the disease can be staggering. One of the most common replies related to peoples reactions when discussing Crohn's. Surprisingly, similar stories came up, mainly relating to family members and friends either flat out denying their is a problem or completely underestimating the seriousness of the disease. Crohn's can kill. This is unfortunately a fact. Not in an agressive 'you have 6weeks to live' type way, but there are countless complications and health problems related to and caused or exacerbated by Crohn's that in extreme cases it can lead to the pearly gates. This is not something I like to dwell on, mainly because its bloody terrifying, but also because it's hard enough trying to live with Crohn's on a daily basis without the cloud of a soiree with G.Almighty hanging over you.
This may go some way to explaining my rage at people writing Crohn's off as "just a stomach ache", "just a bit of cramp" , "just a little tummy pain". Let me tell you now, I have never experienced pain like I do with a flare-up. Pain that is so relentless and unforgiving that you start to go a wee bit mental and would gladly place a gun in your mouth to take your mind (and head) off it. Easy to say as there is no way to describe pain to someone on the outside of your Crohn's bubble. Unless you use the fail-safe NHS describe your pain between 1-10 method, '10, always a 10!'
Other common complaints that arose from my question were related to toilet-times. Many have been told what people assume they can and cant eat and others that they must be at the toilet all the time. Or worse that you must have 'accidents' regularly. I am a 28 year old woman, I havent had an 'accident' since I was a bambino, and even then im sure I was probably mortified about it..
I do occasionaly have an urgency to go the loo and do occasionaly spend quite a bit of time in the bathroom. (We have a book shelf in there..) It really is rubbish enough having Crohn's without people making yukky assumptions about what goes on down there.
A lot of people also dont appreciate the other symptoms of the disease, the sickness, aching bones, tiredness and issues with food. Many jump to the conclusion of anorexia and eating disorders, not realising its not that we dont want to eat, sometimes its just really, really sore when we do.
What I would like is simple. If you are a nice person and you have semblance of interest in my disease (and or rear-end) then just ask! As many questions as you like. Dont assume you know all about it (when it comes to my backside you certainly dont) and dont expect me not to want to talk about it. I dont want you to pity me as there is nothing to pity, im still me, just a bit more diseased than I was! Im not embarrased about it as its happening to me, and if you are then thats fine, lets not go there.
That really is the BOTTOM line.