Hi all and welcome to the second issue!
So what’s been going on recently?
The New York Times Published an article on Medical Gaslighting and it didn’t go down so well.
Beyoncé removed an ableist slur from her new album - but Big Time Rush did not …
Ashton Kutcher revealed that he has Autoimmune Vasculitis .
It was Severe ME Day on 8th August - where are we at with ME research?
Send in your questions for The Chronic Notebook advice column.
The New York Times
As many of us have experienced, medical gaslighting can have a devastating impact on people’s lives. For those who aren’t aware of the term - medical gaslighting is the process by which a medical professional downplays, dismisses and trivialises your symptoms, making you believe they are in your head and not as bad as you claim.
On 29th July, The New York Times published an article on this. The article itself covered the main bases and was well written - what is medical gaslighting, talking to a few people who have experienced it and tips to help yourself.
But it was not well received by many people. There are over 1000 comments on the New York Times page which offer a mixture of opinions on the topic. There are some valid and some well…not so valid points. These mainly were:
Opinion 1: Medical Gaslighting is just a trendy term
Language changes and evolves all the time and a phrase that can best collectively describe a shared experience will be taken up by people. There’s an idea that this term has suddenly erupted on the internet within the last few months. In truth, the first time I can find it mentioned on social media was all the way back in 2018…4 years ago.
Opinion 2: Medical Gaslighting is something that patients will now use against doctors whenever they don’t get their way
While it’s understandable that overloaded medical professionals may be worried about such accusations on top of everything else, it does not mean that the experience of medical gaslighting is invalid and that it isn’t happening to people.
Opinion 3: There’s a difference between lacking empathy, being unbothered and gaslighting someone
It’s also important to recognise that these are often connected. What some describe as an “unempathetic, unbothered” medical professional may actually be a professional who is …gaslighting their patient. Not always, but if not, what is the result of their unempathetic, unbothered behaviour if not dismissal of someone’s symptoms?
Opinion 4: More information should have been directed to the overload on healthcare systems
This by no means excuses medical gaslighting, for there are far more deep seated intricacies, stigmas and ideas that cause medical gaslighting to occur in the first place. Still, such an overload could be contributing to an increase in these behaviours, or at least a lack of ability to tackle them effectively. It would be interesting to investigate.
Opinion 5: The article did not reference advocates who have been speaking on this topic
There is one advocate in particular @autoimmuneabbey who’s post on this back in 2019 was almost the exact same word for word in terms of medical gaslighting’s definition. Her post has been shared many times without her express permission so it’s certainly possible the NYT referenced it…without referencing it I cannot say for certain.
Beyoncé removes an ableist slur but Big Time Rush do not
Beyoncé released her new album Renaissance on 29th July. Her fans are loving it but one of her tracks “Heated” featured an ableist slur in the lyrics (trigger warning)
“Spazzin’ on that ass, spaz on that ass”
A little while ago the same slur was used by Lizzo on her track “GRRRLS”, who after receiving criticism and comments on this, quickly replaced the word.
The word has historically being used to mock, dehumanise and discriminate disabled people. It’s something that we’ve heard as the punchline in movies, popular culture and around us when disabled people are being joked about.
Many disagreed with the removal of the word altogether citing it as an part of black culture and language in America including @erickacknowles
In light of this, several advocates are emphasising the need to pass the mic to black disabled people who have first hand experience with the intersectionality of this issue.
These advocates are also highlighting the double standards around calling out ableist language utilised by black but not white communities, when it should be called out in all instances.
This has been evidenced by a new song by white boy band Big Time Rush called ‘Paralyzed’. Black disabled advocate Ola Ojewumi wrote on Twitter “Currently Paralyzed is trending as fans of Big Time Rush are asking them to release this song. I’m not seeing the same white disabled influencers calling out them for ableist language as they did with Lizzo and Beyonce. As a Black woman wheelchair user, I ain’t surprised”.
(from @Olas_Truth on Twitter)
These inherently harmful word should be avoided due to they’re ableist connotations yes but these debates are revealing the importance of passing amplifying the voice of black disabled advocates and the double standards that we see when it comes to calling out ableist language used by both black and white communities.
Beyonce and Lizzo removed these words from their music - will Big Time Rush? We will find out…
Ashton Kutcher has/had Autoimmune Vasculitis
The Two and a Half Men, that 70s Show actor recently reveals that he has autoimmune vasculitis (or had?). It’s a condition that causes the immune system to attack the body’s own blood vessels, causing them damage and inflammation.
His tweet from 9th August reads “Before there are a bunch of rumors /chatter/whatever out there. Yes, I had a rare vasculitis episode 3yrs ago. (Autoimmune flair up) I had some impairments hear, vision, balance issues right after. I fully recovered. All good. Moving on. See you at the 2022 NY Marathon w/Thorn”
(@aplusk on Twitter)
Public figures sharing their story and health conditions without a doubt raises important awareness about these conditions. There is certainly a selfish part of me that wishes that those with public platforms who live with chronic illnesses and disabilities spoke out about them more.
But everyone has the right to their own medical privacy, and it seems that Ashton may have just wanted to get ahead of the clear rumours that were circulating about it.
It’s hard to say whether he still has the condition or had it in the past. Some forms of vasculitis can be cured, while some can only be placed in remission. It’s likely, because it’s autoimmune that he means the severe flare up he had is over, but we are rightly not entitled to this information.
I won’t lie, I have a feeling some people will read his tweet and assume that all autoimmune diseases can be cured…which is not great. It’s certainly not on Ashton to educate anyone but celebrity stories about their illnesses are often the only sources of information people read…which is a whole seperate issue for another time!
It’s super good news that he is in a better place health wise and once again goes to show that you can never tell what invisible/not fully discernible disabilities and illnesses someone may be living with.
Severe ME day on 8th August
ME, one of the most neglected chronic illnesses by medical research, funding and practitioners has a severity scale. Those who live with severe and very severe ME are often bedbound and unable to basic tasks, self care, socialise, interact with others or tolerate stimuli like light and sound. (MESupport)
There’s still a long way to go on care, treatment and research around ME. I recently created a YouTube Video on some of the most recent findings related to ME and what these might mean for future treatments. You can watch it here.
Send in your questions for the advice column.
Someone recently suggested that as part of this newsletter I do an advice column (like an agony aunt who’s actually in agony.)
So if you’re looking for any advice on questions you have about chronic illness, chronic pain and disability life - hit me up!
You can send your questions to me on Instagram , Twitter or reply on here!
Each month, I’ll take some of your questions and do a feature responding to them all!
I can’t promise I’ll have all the answers but I can promise I’ll be thinking about your question when I’m taking my I feel super bad right now naps and they will therefore have my undivided attention.
That’s all for this time people!
Nia