A common phrase used in the UK is ‘there’s a time and a place for that’. It’s usually employed when someone starts talking about something someone may consider ‘risqué’; sex, bodily functions, graphic descriptions of murder in Swedish crime drama. Picture the scene; we are sitting in our knitting circle, plaid skirts neatly tucked beneath us, enjoying a delicious. piping hot cup of tea, when someone around the circle suddenly says they undid an extra shirt button for their husband the night prior. Naturally, we all spit our tea out in the style of an ‘80’s spoof film and our tray of cucumber sandwiches instantly turn to mould. It’s NEITHER THE TIME NOR THE PLACE FOR FILTH.
So, with this precarious attitude towards openness in full swing, where does talking about chronic illness fit in? What’s the right time and place? I don’t think I’ve quite found it yet. Is it OK if I discuss my illness over dinner for example? Nope: I don’t want to hear that when I’m eating. OK, well can I talk about it when we’re out for a drink? Nope: I don’t want you bringing the mood down, we’re trying to let our hair down! Right, I guess maybe it’s OK if I briefly mention it at your Grandmother’s funeral then? Nope: this isn’t about YOU! You’ll spoil the cucumber sandwiches! AGAIN.
So it would seem we can’t talk about our conditions while we are eating, or drinking, or grieving over re-heated sausage rolls? When can I? You can see how much of a minefield this whole thing is. Or is it?
Well personally I’ve never bought into the idea that there is a certain ‘moment’ when it’s ‘appropriate’ for me to talk about a major and debilitating part of my life. Of course, I’m not immune to social cues and what the general population deems ‘acceptable’. I know, of course, that discussing my bowel movements at the bus-stop with your small child or talking about abdominal surgery with a visiting Nun is not ideal. But that doesn’t mean I agree with all these MADE-UP RULES. Nuns and small children have bowels too after all! Last time I checked anyway!
[clarification: I haven’t ‘checked’ any nuns or small children for bowels]
I tend to joke about my condition a lot, generally because it makes people around me feel more comfortable and helps to lighten some of the heavier feelings for me. Living/feeling/thinking about being ill 24/7 doesn’t leave much room for the fun-stuff in life, so I try to lighten the more stressful conversations where I can. The truth is, most of the people who have come across as offended, or uncomfortable when I discuss my illness don’t actually really how lucky they are. They get off lightly! Imagine being one of my friends, my partner or my family! The get both barrels of my illness-patter shot directly into them with NO MERCY. But they also understand that the state of my health is important. Me feeling ‘well’ and happy is important to them too. The two go hand in sweaty-palmed hand – if I’m well, I’m happier (naturally), but also, being able to talk about my health without fear of judgement, reprisals or shame is vital.
Those without chronic illness, or without a loved one who suffers an incurable condition will perhaps struggle to adapt to those of us wishing to be more open and transparent about our sickly lives. I know the natural urge here is to bellow something like “Well it’s THEIR problem not mine!” and stick up two GirlPower fingers at no one in particular. But that doesn’t actually solve anything. I know I am well within my rights to talk about my condition when I choose, but I also know that some people find it difficult to hear. So, I’ll tailor my conversations to suit my surroundings, like some sort of chronically ill chameleon. Don’t get me wrong, that doesn’t mean I shy away from speaking out - if I feel misunderstood, or am shamed in any way, or my words are misinterpreted, or assumptions are made about my life, I will jump into those murky conversational depths with both feet.
I have no shame over my illness or my somewhat damaged and decayed body. I love my body and I love myself. I love that I am loved for me – diseased bits and all. This point has taken me a long time to get to, and it’s still like walking on a self-love tightrope on a daily basis, but I’m happy with my attitude towards my illness. No one has the right to shut me, or any of you up, or decide when or what we should say about our illness. So talk openly when you need to, talk to those you trust and don’t ask Nuns to check if they have workable bowels.