Listening to Christine Gordon of @ReadingsBooks launch @Jacinta_Parsons’s book “Unseen” - a book not just about the events of enduring & #chronicillness but also about its #complexity. JP hopes that she has captured something of the nuance & diversity of the #LivedExperience...
@Jacinta_Parsons says the path to dx is an underappreciated & often lengthy aspect of the experience of chronic illness - it’s not necessarily an easy path to getting a diagnosis & treatment.
When the change in your health is incremental it can take years from the onset of symptoms to eventual diagnosis. I am fascinated w the transformative power of the diagnostic moment #crohns #socdx
Boy am I feeling that energy path/incremental change tummy right about now!
In reality, there are no Dr Houses (and it’s probably n out Lupus, even if it might be other #autoimmune stuff)! 😜
“It soon dawned on me that it might not be possible to have my illness understood the way I needed it to be”. The constant fear of illegitimacy, even when you have a diagnosis: maybe it’s all in my head, maybe I should just be dealing w it better.
“Am i really sick?” The constant doubt & sense of alone-ness bc it’s not possible to truly share #LivedExperience with others & language so often falls short of what we need it to do when communicating this kind of internal & psychological & social experience
#HealthSystems knowledge & #HealthCapital v important to succeeding in interactions with with #AusHealth system, esp as a public patient. #healthwork #KnowledgeWork
The fragmentation of
the health system & its parts. The heightened sense of disconnection sitting in doctors’ waiting room. Presenting oneself as an “easy” patient who is easy for a hcp to be compassionate to - #healthwork #EmotionWork @Jacinta_Parsons
The power of nurses giving connection & care, the ones being there at 3AM, talking to you. -.@JacintaParsons
The HOPE imbued in each new relationship with a new doctor in the public system & the work & stress of having to recalibrate & make new connections with a new person. Medical relationships are not actually transitive.
The importance of doctors having the life experiences to understand “what it means to be broken” - helps to develop their empathy & compassion. @Jacinta_Parsons suggests that this might be partic nec for drs who have a history of being high achievers & valuing success
Although I’ve also been thinking this a lot over the last few wos in the context of having been in a pub - teaching - hosp, where teaching/learning grps are the norm & you overhear teaching rounds & meet students & see the Registrar w the Residents but also with the Consultant!
&the fact of imperfect knowledge & constant ongoing learning& “failing better” is also really normalised, I’m both practice but also in case formulation & developing treatment plans. Esp since being interviewed by the Residents for their LongCaseStudy & finding out the pass rate!
Reminds me of a podcast about attitudes towards failure I listened to a month or two ago where the pingpong champion narrator was highlighting the attitude differences to learning / success / failure & esp learning-from-failure in health & aviation vs e.g. education
@Jacinta_Parsons on the difficulties of remaining in laid work & being forced to inhabit a world not built for the complexity and diversity of our health.
The power of diagnostic testing & imaging: going under anaesthetic & the nothingness of it, becoming disconnected from your body, but the strength of @Jacinta_Parsons’s HOPE for “something good on the other side”. How fricking resonant for me this month of all months.
I DO feel seen.
*paid work
@Jacinta_Parsons draws links between the #COVID19Vic experience more generally & #chronicillness more generally - coming to inhabit the new normal of the #KingdomOfTheSick (as Susan Sontag or Arthur Frank might Call it). something important about the #chronicity & relentlessness
of it, & of the isolation.
JP commenting on the difficulties of navigating a fragmented medical system & even just existing as a unified, complete human being when experiencing overlapping conditions - as so many of us w #autoimmune #chronicillness do. It can be so hard not to compartmentalise...
...when we’re constantly up against a whole lot of disparate aspects of the #HealthSystem. No kidding! Signed, someone who was seen by Infectious Diseases, General Medicine, Gastroenterology, Dermatology, Rheumatology & Respiratory medicine during my two-week hospital stay...
...and probably need to go see an allergist again soon, too.
The importance of the interconnections of body & mental health in #chronicillness. Or, as @PriceMargaret might put it: bodymind
“Kind eyes over your mask”. 😷😄
Wtf was this tweet ACTUALLY supposed to say? Bloody autocorrect! 😳😆🙄
Here’s a link to the podcast episode: “The Science of Success” with @matthewsyed hosted on @PaulBarclay’s Big Ideas segment. Definitely worth a listen - entertaining as well as edumacational (& told in such a way as to make it all the more memorable).
Oops. HERE’S the link: abc.net.au/radionational/…
Well done to @julia_zemiro for hosting a fantastic & fast-paced discussion of @Jacinta_Parsons’s new book, “Unseen”, for the @ReadingsBooks launch tonight. Really enjoyed it & lots of food for thought. Clearly need to get my hands on the book ASAP!
*”it’s probably not lupus”. I literally made a doctor laugh out loud last week when I announced, (accurately), “It’s not lupus, it’s just All the Other #Autoimmune Stuff”! 😆 Alas, the Intern was far too young to know what I was talking about. 🤣 @steve_kambouris @BattenbrgBarbie
= “Boy am I feeling that [difficult path to legitimacy/ the difficulties of dealing with & understanding the significance of incremental change while you’re living it] thing right about now!”

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More from @monika_dryburgh

8 Oct
Dear #NEISvoid/twitter, I am VINDICATED (&, uh, still hyper on steroids, FWIW). Awesome Sleep/RespDoc is of the educated &firm opinion (upon reviewing my hospital discharge summary, lung function test results...which the hospital still hadn’t passed on yet as of this morning? 🙄)
...that I have NOT suddenly & completely coincidentally managed to develop asthma for the first time in my life at the tender age of 39 (although he thinks it does sound like a bronchospasm cough, which is literally how I was describing it when it first started happening.
Nor do I seem to have any kind of lung problem, nor a recent past upper/lower resp tract infection). Although apparently he hadn’t received the results of either of the sputum culture tests from the hosp. I’m assuming they were boringly negative or I’d have heard by now, though.)
Read 18 tweets
7 Oct
I’m not sure if there’s anything more [@steve_kambouris + @monika_dryburgh] than us spending an HOUR watching 01:32 (one minute and thirty-two seconds) of an audiovisual entertainment (online miniseries) that we are both genuinely really enjoying & are v engaged with. 😯😳🧐🥰😌
We keep having to stop to TALK ABOUT THINGS! 😆 📺We have to research diegetic & extradiegetic aspects of both text & paratext (& actual political history), check my interpretations of the narrative esp wrt actual historical events &/or particular characters...
... check my facial recognition & name-matching to chars (& often then detour even further to go investigate just how GOOD the casting & make-up/prosthetics & costuming & sheer physicality of the actors is in creating believable representations of the “characters”)...
Read 5 tweets
7 Oct
Looking forward to hearing from John Byron in today’s HPS seminar on “Critical Friends: insights for science from the humanities”.
Noticed during last year’s metascience conference an emerging narrative of anxiety around critique of published results/reproducibility in science.
John found this anxiety narrative quite jarring, coming as he does from humanities work in e.g. Lit & cinema studies, where critique is central to methodology!
Read 26 tweets
6 Oct
Too tired to comment personally atm, anyone want to add? (“Extreme male brain” theory, and lack of ToM & the idea that we ~~don’t have empathy~~ are the broad strokes.) @milton_damian @danialexis @AnnMemmott
@louiseallana Lol, timely, btw! 😁 P.S. for you, if you have the time/energy/inclination: autism & the double empathy problem (Damian Milton): , An Expert Discussion on Autism & Empathy (various, incl Melanie Yergeau): liebertpub.com/doi/10.1089/au…,
Representing difference as pathology: An Example from SBC’s The Science of Evil (Rachel Cohen-Rottenberg): autismandempathyblog.wordpress.com/representing-d…, Autism & empathy: what are the real links? (Fletcher-Watson & Bird): ora.ox.ac.uk/objects/uuid:0…
Read 6 tweets
6 Oct
Thinking about the time, c15 years ago, in the middle of undergrad, when the genuinely-helpful psychologist I was seeing through the uni counselling service decided (entirely appropriately & ethically, imho) that I was officially Too Complex for her to competently help...
given the limitations of the situation: the limitations of her own training & expertise, the maximum of 6 counselling sessions available to us per semester, my worsening & multiplying complex physical health problems (very incompletely-diagnosed)...
the impact of recurrent bouts of anaemia as well as immunosuppressant side-effects on my constant fatigue, the interactions between my increasing disability & pain & concomitant sleep issues & my mental health, fatigue & pain levels...
Read 40 tweets
6 Oct
@KylenH @bennessb Yes, I think so. I don’t have the super-soft/delicate/stretchy skin of EDS classic type,, & although I do get atopic dermatitis it seems to be different to the irritation & peeling skin I get from tape. I also get a particular (&, I think, related) skin reaction to anything that
@KylenH @bennessb rubs, including my otherwise-awesome thumb splints. Alsoalso very prone to skin tags in high-friction areas, fwiw. I don’t seem to have full-on #MCAS on anything, but I do wonder if #MastCellsGoneWild could be implicated somehow,
@KylenH @bennessb esp given my recent experiences of simultaneous #multisystemic #autoimmune #chronicillness affecting GI system (#IBD: #crohns but also #GORD), skin (#PyoG), joints (#AnkSpond/#spondylarthropathy/ seronegative #arthritis) & prob aspects of the respiratory system
Read 9 tweets

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