Lately I’ve wrestled with that age old poser in living with chronic illness; ‘How much is too much information?’
Now, I already grudge the fact that I’ve had to start this post with a question, like some sort of diseased Carrie Bradshaw, but needs must. Although I write this blog and other pieces on Crohn’s Disease, I am active on social networking sites and never shy away from discussing my condition if asked, it doesn’t in any way mean that my life is based solely around my disease. If anything it’s a blessing when I have the opportunity to think about something else for more than 5 minutes. I find it still seems with some I can’t find a happy medium between talking about Crohn’s and all it means for me, and just giving a general overview of the fact that unfortunately, I’m STILL SICK.
I find it increasingly frustrating when people assume that if they see me having a bad day (or a series of bad days) it must mean that I am depressed or that my personality has somehow warped into that of a misery-guts (pun intended). I understand it’s never all hearts and flowers with Crohn’s, but surely I am permitted some occasional wallowing time? The thing is, it’s not even proper ‘wallowing’ – it’s simply trying to paint on a smile and plough through the day when all I want to do is curl up in bed with a variety of wee cats and a cocktail of drugs until I’m not in gut churning agony. I wholly appreciate that hearing the more gruesome or worrying aspects of my illness must be upsetting for those who care about me, but on the other hand why should I have to edit what I say for fear of upsetting others?
I certainly don’t discuss those symptoms that may be considered nauseating for those without Crohn’s, but I often feel I’m forced into the position of having to ‘put a face on’ to spare the feelings of others. It’s ME who has this disease. ME who has to deal with it 24hours a day for the rest of my natural existence, and it’s ME who sometimes gets completely and utterly overwhelmed, and fed up with those far from simple facts. Yes, I am well aware that perhaps that all sounds very child-like and dramatic, and ME-ME-ME-ish, but it’s impossible not to feel that way from time to time.
Crohn’s patients, unless they have entered into that mystical realm of ‘remission’, will experience pain or discomfort of some description almost every day. They will feel nauseous and floored by treatment and fatigue. And they will often be sick to their bowels talking about it. It’s nice to be able to forget from time to time, and it’s even nicer to feel you can share some of the burden with others. Don’t forget that we don’t want to feel this way. We certainly don’t want to be type-cast in this particular play as the ‘sick one’ and when we are down it’s because we have normal life and all its problems to deal with alongside a relentless illness. Crohn’s isn’t something we can predict, or turn off and on when it suits. It hands us varying degrees of misery and how we deal with it depends as much on our immune systems as our outlook. Please bear with us when that can often be as changeable as Scottish weather.