Conversations with Tash: A Guide for Friends, Family and Acquaintances.
For better conversation, unless you're really interested, and have the time to hear about the details of my daily struggles & triumphs (& even then, I'd rather not talk about this all the time), instead of asking me how I am or what's been going on in my life (which generally results in me answering somewhat awkwardly "yeah, ok..." & "not much"), please chat with me about TV shows, politics, world events, social justice issues, sport (particularly AFL or cricket), Theology, issues of ethics or morality, and/or The Arts.
I also, quite honestly, would love to hear about you and your life.
Cheers!
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As with many others living every day with chronic illness, it is very difficult to answer a question about what's going on in my life without talking about illness.
I do have close friends and trusted people in my life with whom I can be vulnerable and talk about my struggles & griefs, as well as the triumphs; people who I know really know me, and care. It's important to have those people. However, in general, when it comes to casual conversation, or bumping into someone at an event or at the shops (on those occasions when I actually leave the house for something other than a medical appointment!), the questions "how are you?", "what are you doing now?" or "what's going on in your life at the moment?" make me internally cringe, and feel like hiding. I don't blame people for asking those questions, heck I've asked people those questions countless times myself. But at this point in my life, I feel awkward answering, and my answer has the potential to kill the conversation.
Somehow answering the question of "what's been going on?" honestly with something along the lines of "oh you know, feeling like crap constantly, trying to get through each day, taking lots of tablets, feeding myself when I can, dragging myself to doctor's appointments, pulling up syringes and giving myself injections, making detox juice, wanting to throw up, and laying in bed in pain feeling completely exhausted to the point of barely being able to move" just doesn't seem like a fun and socially acceptable way to start a conversation. So instead, I generally shrug, and with some embarrassment and awkwardness, answer with something along the lines of, "not much really".
However, there IS a lot of fun and interesting stuff to talk about. I would much prefer to talk about something that I'm passionate about or that I find entertaining, rather than always talking about health stuff or other difficulties. I live with that stuff 24/7 so it's nice to have a break from thinking about it! Plus, I'd like people to understand that there is so much more to me than how I am currently spending my time.
There are friends, family and acquaintances, particularly those who I haven't seen for a few years, who may not realise that 'what I do' right now is simply focussing on looking after myself and trying to get better, taking each day as it comes & doing what I need to do to help care for my mum (who is also extremely unwell and for whom I am guardian). It doesn't involve paid work, or even much by the way of leisure activity.
So, here's a helpful tip for how to have a more interesting, fun, life giving conversation with me, rather than one that may falls a bit flat. Talk with me about TV shows, politics, world events, social justice issues, sport, Theology, issues of ethics or morality, and/or The Arts. These are things that I can get excited and passionate about, things that are fun and interesting to me, things that enable me to express something of who I am apart from a person living with chronic illness.
And as for asking "so, what are you doing with yourself nowadays?"
Please, don't ask me that question.
Are you a person living with disabling chronic illness? Do you struggle answering these sorts of questions?
Do you know someone, a friend or family member, living with a debilitating chronic illness and struggle to know how to have a conversation with them?
It would be great to hear your (respectful) feedback, and get some conversation going around this topic.
