Wednesday, 15 April 2015

Tears of a Crohn

It has been brought to my attention lately, through discussions with loved ones, that I can be too light-hearted about my illness. I'm not sure I entirely agree with this, as for one I find that laughing at my predicament has helped me massively, in overcoming the more grim obstacles having a chronic illness puts in my way. Having had this suggested however, has made me rethink how I communicate my sickly 'news' to my family and friends.
Up to now I've declared things such as changes in medication, major side effects and potential outcomes to treatments and procedures, with a fairly laidback "ah well" jolliness. I try to be ‘IT’S OK’ about it because by that point (for me) it usually is. As I've had time to digest these horrid nuggets of news and potential glimpses at my future myself, before telling others.
The calculation usually goes   me + doctor = bombshell x confusion.
I have time afterwards to think over what has been said and consider all outcomes and how I'll cope with them. I also have time to fall apart and put myself back together again before burdening anyone else with tears and tantrums. Of course those of you reading this who know me, are already furious and shouting at your screen that I should be talking about my worries and that I’m not a burden blah blah blah… I KNOW - but it’s still my disease and I have to process what’s happening to my body in my own way.

So how much consideration should be allowed when considering others reactions to my treatment?

It’s a question I'm at a bit of a loss to answer. Maybe you can help me out? Do I tell you facts with no emotion? Do I weep outwardly and upset you in the process? Do I drag all of you into the doctors’ office with me and let him do the work?

None of this is sarcasm by the way, I genuinely don’t know how to do this. I want those around me to understand the complexities of living with this, yet feel comfortable enough in talking to me without applying head-tilting pity, or assuming I'm always just an inch away from a nervous breakdown. 'I'm fine' is a phrase I've been programmed over the past few years to gradually phase out of my vocabulary because it means nothing and is generally a flat lie. But if I can’t laugh at what’s happening how do I communicate it to you?
I do understand that cold hard facts that may have a massive bearing on my future health aren’t easy to express - I know this because it’s me who has to do it. I also know that stating potentially frightening possibilities is similarly heart-breaking for those who don’t have to live with the threat of bad-bowel news headlines hanging over them every day. But where does the line lie between laughing and crying? It seems my news must always be peppered with the misery society assumes it must deserve, and in reality that’s not how I want to live my life, or look at my illness. So whilst I'll try to look objectively at my comical relay of potential side effects such as nausea/vomiting and/or death , you too must consider how you react: don’t treat me like I'm made of glass, and don’t make my disease about you.

Please don’t assume that I hide my real feelings behind LOLs like the tears of a clown; I'm not half as pale and vastly more sparing when applying blusher. 

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