You Seem Angry

This has been said to me more times than I’d like to hear lately. The last thing I wanted to be known as was the angry old disabled woman. I was never angry with the world for the fact I am disabled. I wasn’t angry with my body. I’m an atheist so I couldn’t be angry with God. I don’t think people who know me would describe me as an angry person. I laugh a lot. I have an extremely sarcastic sense of humour. I’m compassionate, motivated and most of the time pretty badass. I get angry but I’m not an angry person.

Yet here I am defending myself to a stranger online who thinks I seem like an angry person because they didn’t like that stood up for myself, that I tried to educate, that I didn’t take bullshit. They don’t like it when I call out bad behaviour…

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On Difficult Dx Conversations

So I just got some bad medical news and I have some intense stuff to go through before I know the full damage or what to expect. But not much is going to change, I’m just going to be less available for others for a while. Study goes on, comedy goes on. There will be interruptions and some difficult stuff. But I need to focus on my own care, more than ever and I have been trying to build a support team.


Yesterday I reached out in a number of ways for help to select people and it was nearly as difficult as hearing the news my genetics have failed me. I reached out to people because I don’t have family nearby and what family I have left can’t help.


People say “they don’t know what to say”. Well, I decided to write some tips after I spent 30 years of my life caring for my Dad with cardiomyopathy until his death (plus my own chronic illness story).


A few pointers, thinking about the social model of medicine/disability…


1. It’s hard not to react, but try “I’m feeling <briefly insert feelings> about this. But it’s not about me, how are you feeling about all this?


Try and wind back sadness or shock the moment you talk about someone’s difficult diagnosis. It buys into the ableist view that Dx is bad. Dx can prevent you from dying from something you didn’t know you had – or be helpful in understanding why life has been different and make life easier. But also, forgive yourself for reacting, it’s human!


Some Dx may mean you know you have less time on the earth than others…but if you take time to read about this, for many people, they learn to value what time they have left and that’s not always a bad thing. In my case, I’d rather know and have parameters around that, than drop dead suddenly in front of you.


2. Pause for a minute when unsure what you can offer. Try “Thank you for trusting me with this. I am feeling < briefly insert how you feel about it>. I am not sure I have the ability to deal with this as well as I would like to. I want to help, but < briefly express limitations>, so is there anything else I can help with?


It’s not about you and your discomfort or schedule. This information may make you uncomfortable, for the other person it’s much more than ‘uncomfortable’. People who are sick are not a burden, but they often feel like (even subconsciously) they are.

Don’t use platitudes instead of real and genuine communication because you don’t know how to deal with the information – it’s not being helpful. It’s unintentional gaslighting and that’s not your fault, its something we’ve been taught is okay. But it’s another capitalist social convention aimed at isolating people for being sick. “You’ll be alright” “What doesn’t kill you” “This will pass” (I’ve been guilty of this one) “Take all the time you need”, “Things are much better with medical technology now”, “You’re tough, I’m sure you will be fine”. These are just plain dismissive, even though we might have thought they were ‘positive’ things to say.


3. When you mess it up, don’t go silent. There is also not necessarily a need to apologise either. Just say “I didn’t do that well. I’m feeling < briefly insert variations on the two approaches at #1 and #2 above>”.

I think this should be fairly self evident, but apparently it’s not! When you genuinely say you care about someone, ghosting is never okay, whether a friend or any other relationship – no matter how uncomfortable your stuff up made you feel. (Note: this is very different to when someone has abused you – you have every right to put in hard no contact boundaries when someone has treated you with contempt).


4. Be clear but kind about what you can assist or not assist with.

The last thing people getting tough medical news is people around them who are just bullshitting about wanting to help out of some perceived obligation.

It’s hard enough for the person dealing with this, it’s really not about you and if you are genuine about the person affected, you won’t play the appearances game.

And remember it’s okay not to do this perfectly. These are just suggestions, as long as you work to centre the person experiencing the difficult Dx, you word it how it works best for you.


The end.

Little c Courage

Enough talk of resilience. Enough talk of trauma. I want to talk about courage instead.

The Deadline

So, our family has been through a shit-ton of well…shit. I am prepared to accept that there is evidence for intergenerational trauma. But I have been saying that then that also means that there is grounds for intergenerational resilience. But, I want to talk about courage instead.

This tweet (pictured below) made me realise just how much I am really f’n sick of both the word resilience – particularly as Melbourne is in yet another lockdown right now. The tweet from Zandashé L’orelia Brown (@zandashe) reads: “I dream of never being resilient again in my life. I’m exhausted by strength. I want support. I want softness. I want ease. I want to be amongst kin. Not patted on the back for how well I take a hit. Or for how many.”

Resilience, seems like another measurement of the hits we have taken, not a measurement of our own…

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