J is for Judgments & Justifications

But you don’t look sick?

What does ‘sick’ look like to you?

It’s just gone midnight, myself and Corin did a live today (well, now yesterday) and the first feeling I was left with, I am ashamed to say was an overwhelming sense of anxiety. This is rare for me, as I am so super-proud of all @bisforbladder does to try and change the narrative around chronic illness. The feeling I was left with was worry. Worry of people’s perceptions of me. Worry of judgements that may be cast upon me for just ‘showing up’ to chat all things invisible illness with my friend and pro-patient partner in crime.

I know writing this here now, there are no judging eyes but I can feel them, burning right through me. I can hear the judging mouths saying: ‘Well she’d washed and brushed her hair last night, so she must be fine.’ ‘She smiled and laughed along with Corin, so she must be fine.’ ‘Her voice didn’t sound poorly, I mean, she even had her nails painted, she must be fine.’ ‘She’s lost some weight, she’s looking really WELL, she must be fine!’ (Can you tell this last one angers me the most?)

I sat with these thoughts for an hour or so and who should slide into my Instagram DMs with a reassuring comment but, my faithful friend A. We are calling her friend A for anonymity purposes but, right here, right now, I am going to type to you, verbatim my conversation with friend A as this conversation flicked a switch in my brain and allowed me to free some of my own perceptions and judgements that I cast upon myself far too often, and far too freely. I don’t need extra things to carry around, god-damn it, what am I doing?!

Friend A: You did yourself proud this evening lady!

Me: Thanks love. It’s sad really as I’ve come off the live feeling quite paranoid rather than proud – this is unusual for me.

Friend A: Don’t you dare Aoife Madden, I can hear where this is going. What are you paranoid about?

Me: What other people think! It’s madness how conditioned we are to what, ‘sick should look like.’

Friend A: You’re allowed to smile and have a life Aoif, even if you’re currently living a life of hospitals and treatments! It’s wonderful to see you smile.

Me: This is true. I’m sad it’s left me feeling anxious as that’s the opposite of what I was even trying to portray on my live. Oops!

Friend A: People are not going to begrudge you for filling your time with Instagramming and building a chronic illness community which is all about inclusivity and positivity! And if they do, well they’ll have me to answer to. In all honesty Aoife, that would say a lot more about them than it does about you! Remember that. Personally, I am always glad to get an update and see you smiling from time to time!

Me: Hmmm yeah I do agree, it just unnerves me as you can’t control other people’s thoughts and I know there will be that one person. God knows, I could’ve been that one person in my life time towards someone else. I guess open-mindedness and empathy are two things I’d love for people to have taken away from the live this evening.

Friend A: If they don’t want to listen to what you’ve got to say because it screws up their idea of how sick you have to be or their ideas of absence or their ideas of you, then they don’t have to! You can’t control whether people stop and listen - you didn’t make them! I think you are an absolute hero for keeping up with social media, raising awareness, trying to make change and help others all whilst going what you’ve gone through recently. I see your blog and Instagram as maybe a tool that not only helps others but helps you too with processing your own thoughts and feelings. If anyone judges you, they’ll have me to answer to that’s for sure.

Me: Thank you! You’ve really got me thinking – how do you always have the right words to say?! Wise woman! You are actually calming my worries here, maybe it’s my own views of ‘how sick is sick enough’ that need to be challenged.

Friend A: Mad you think like this Aoif, but I do get it. If anything, it shows me how f*cking strong you are!

Me: These thoughts are making me feel weak.

Friend A: Word of advice – last one of the night – the sooner you switch off from these thoughts the better!

I started this post at just gone midnight and I am now, here, finishing it at 3:25am post-bladder stone passing and a hot bath for pain. Woozy is not the word.

Let me leave you with some statements, questions and anecdotes that may challenge your perceptions and maybe help you to break free of preconceived judgements if you too are struggling with these intrusive thoughts. These are all wise words of wisdom I have collected from my beautiful friends and family over the years. I hope they help you as much as they have me.