Losing My Mind: Dr Suzanne O’Sullivan
Edinburgh International Book Festival this year, dropped the ball by including a talk by Suzanne O’Sullivan.
I am complete ball of fury reading Rosamay Kaye’s review of Suzanne O’Sullivan Book Festival speech in The Edinburgh Reporter, The Age of Diagnosis; perhaps it’s my undiagnosed ADHD. I am quoting from the review throughout this. I refuse to give the good doctor my money, so perhaps I will write a review of her book in time.
Part One
Huntington’s Disease
Dr O’Sullivan has the balls to use Huntington’s disease (HD) as one of her examples for why we are being over diagnosed with, her scary word, labels.
Any medical professional who talks about receiving an HD diagnosis, and a diabetes diagnosis, and thinks their comparing apples to apples should lose their medical licence.
‘Suzanne gives the example of Huntingdon’s disease, for which there is now a test. Children of affected parents have a 50% chance of developing it themselves. They are offered the test, but after genetic counselling. 90% of them refuse it; they know the effects of that label. Huntingdon’s is not curable; they decide to live their lives free of a diagnosis unless and until actual symptoms surface. Their rationale is that, were they to get a positive result, they would inevitably act and feel like someone with the disease, even if they were asymptomatic for years.’
I have Huntingdon’s; I my life is living through this nightmarish choice; being one of the 10% who wanted to be tested; and to then to work out I am carrying the gene for HD; and whilst I am currently non symptomatic, I could wake up tomorrow with symptoms. I am living Dr O’Sullivan worst case scenario.
To try and use HD, as an easy comparison to people signing up for excessive medical screening, is medical gaslighting, because having HD exists in a totally different contexts to most people accessing medical care. It’s like comparing the grief and pain of terminal cancer to someone getting bloodwork. This is insanity. They are completely different experiences and need completely different care and support.
The thing about Huntingdon’s that the Doctor does not provide enough context for is that HD is a genetic condition. That test she’s minimising is a genetic test. If you have the Huntingdon’s disease gene mutation which is dominant, you will have Huntingdon’s disease. If you see articles in the media about HD its normally accompanied with the phrase - family curse. To even access this screening, either: HD has been haunting your family for generations; or this is a life altering surprise that will completely alter your existence going forward.
A fact Dr O’Sullivan actively conceals is that the genetic test has only been available since 1993. Too late for my Grandmother, who died of HD. When my Father was diagnosed in the 1970s there was nothing, he died of HD. Now I am diagnosed there is the test, and also nothing. No treatment, no way to reduce symptoms, no way to change our diet to look after our minds in the long run, no effective medical targeting of the huntingtin protein that is clattering about inside my brain, slowly destroying it. To have this lack of treatment for a single very specific condition used by Dr O’Sullivan to encourage other people, without HD, to not seek medical treatment is beyond degrading. It’s an insult to the grief I and other sufferers carry every day.
Another factor the Doctor didn’t’ seem find relevant is that HD is a rare condition, with only around 7,000 people affected in the UK; in comparison to the 3.5 million people living with cancer in the UK. The experience of having HD is an endless loop: a pharmaceutical company wants to look into X treatment, and then they drop it almost immediately because 1) brain conditions are hard, and 2) even if they did develop a treatment, they’re only going to make a pittance of money, selling to a tiny sliver of the population. In the supposedly moral world of capitalist medicine and research, there are always people who are not worth it.
So, Dr O’Sullivan, I thought I’d be helpful and present a few other, actual reasons people turn down this test. It has nothing to do with ‘labels’; beyond the complete lack of medical treatment available. There can be pressure from family or romantic partners, or even just a desire not to destroy them with the crushing reality of your condition. You must declare a positive HD result to insurance companies, meaning you might pay higher premiums or lose coverage altogether. You can be turned down from jobs. You might already be symptomatic. You might already have children. And that’s not even mentioning the fact there is zero NHS support for pre-symptomatic cases. No therapy. No counselling. Nothing. Because technically I’m pre-disabled. I don’t get a drop of Equality Act 2010 support until I’m twitching or losing my mind.
Can you see why there might be 90% rate of refusal of the tests for HD, Dr O’Sullivan? Can you see why it makes me irate to see you use that figure to scare to other people into not accessing medical care? Living free of diagnosis is not this panacea to throw around. Ignorance is not medicine.
With all due respect, unless you live in one of the geographical hot spots like Yorkshire and Scotland, did you know about HD? Would you consider the label of ‘I have Huntington’s disease’ to have any cultural meaning? It’s not like saying I have cancer, or ADHD. Those are labels with meaning. Dr O’Sullivan claims people with HD ’decide to live their lives free of a diagnosis’ which to my eyes in another infuriating misunderstanding of HD. What HD families are often trying to avoid is stigma . HD is an extremely stigmatised disease. HD families are the first people to be on the receiving end of this stigma, This discrimination is what awaits you upon getting that positive, life-destroying test. So it’s hardly a surprise that 90% refusal rate is so high. For someone so fixated on the idea that labels are ruining medicine, O’Sullivan has nothing to say about medical stigma or stigmatised conditions. What adds insult to injury is that due to the combination of the rarity of HD; and the stigma; there are very few patients advocates who are wiling to be public about having the condition and directly argue against her point.
I’m an odd duck because after all this, I did get my genetic test result. Some people don’t want to open pandoras box, some do. I’ve had nothing but fascinating, moving, diverse, human conversations about this with other families affected by HD. Dr O’Sullivan claims that I will ‘inevitably act and feel like someone with the disease’. Her confident inevitably brings me to fury once again. I will offer an alternative perspective. The way the symptoms of HD, I do have a moment of pause when my arm muscle idly spasm, or I slur my words, or I choak when I eat too much food in one bite. I do have that beat of ‘is this the beginning of the end?’ and then I go back to what I was doing. But the thing is Dr O’Sullivan, I did that before the diagnosis, not after. It will not surprise you to hear there is a massive cross over between people with HD, and those suffering depression and anxiety. Y’know, because of the whole “living with an incurable brain condition” thing. Dr O’Sullivan takes one, anecdotal bad reaction to a horrifying diagnosis and inflates that as a rule we should all live by. Where is the science in that?
I am furious for Dr O’Sullivan taking one very specific disease group and using that information to slander all people looking for medical support. A group she patronises and says she knows better than, yet consistently misrepresents and misunderstands. Her arrogance is stunning.
Now before we turn to other things. I also want to highlight, how much time and effort it takes to respond to a single paragraph of well-crafted bull shit.
Part Two
ADHD & autism the rest of the mess
Dr O’Sullivan begins with a fluffy waving away excuse, that ‘her intention is not to tell people there’s ‘nothing wrong with them’; she has no time for the view, often loudly espoused by some of the older generation, that young people should just snap out of it and stop being so pathetic. Her issue is with the over-medicalising of problems’ they will start to act like a sick person, even when they’re not.’ Doctor, what’s the right way to be a sick person? In your mind? Isn’t that an inherent ableist premise? That there is a correct way to be sick. There might be a small number of cases of this hypochondria, but it’s baffling to suggest that the best way to provide health care is to not let people tell themselves they are sick. Hey, I’m sorry about that broken leg, have you tried not feeling sick?
Dr O’Sullivan throws people with diabetes and hypertension under the bus as well, as a bit of a smoke screen from her true targets; ‘Suzanne is particularly concerned about testing for hypertension, diabetes, autism and ADHD. If you are severely affected by any of these, any negative effects of testing will be far outweighed by the access a positive result will give you to treatment and support’. But she returns to her actual focus of fearmongering about ADHD and autism later.
I have been screened for both ADHD and autism. I personally don’t find filling out a single form each and being a little introspective about my life to be devastating in the way Dr O’Sullivan is implying here. As someone with many close friends and family members with diabetes, I would not describe the testing process as medically barbaric. I agree that people can have a changed relationship with their body. But I think that the change is not normally be caused by a diagnosis, but first by the symptoms. As a mad lady, I think it’s insane to suggest that idea about any of the conditions she insists on fear mongering about.
I don’t know about you, but when I turn to my GP for answers, is it’s not because I am seeking some hot new diagnosis. It’s because I’m having symptoms, that are reducing my value of life. The treatment or diagnosis should help with those symptoms and improve my value of life.
As someone with HD in my future I am fucking jealous of people who don’t just get to treat symptoms. As someone on a 15 year waiting list for an ADHD diagnosis, I have different feelings. I’ve been managing my ADHD for over 30 years now, and it was only a few years ago that I was able to have someone put a name to the struggle. Not all that management was great; when I was much younger, I had a huge issue with self-harm that I had to learn to stop. Now as an adult, do I get that support from the NHS or medical establishments? Absolutely not. I got that via other folks with ADHD. From my community. When you are left totally alone by medical experts for years, you have to draw on alternative methods of support. Or you add to the rising suicide rates in the UK.
If you are someone who enjoys maths, the life expectancy for HD conditions caps out at 30 years, the fact my Father lived as long as he did was a huge surprise and he was a fighter. I could wake up with HD symptoms tomorrow, and be half way though my expected degeneration, before I get screened to see if I have ADHD. Can you see why I might be motivated by injustice.
Dr O’Sullivan believes ‘You’ve got to have a recovery narrative to get better.’ She is directly engaging in fear mongering about conditions that can’t be cured. What about chronic conditions, dementia, MS, MED, HIV/AIDS, muscular dystrophy? She herself mentions ADHD and autism. These are all conditions we cannot ‘get better’ from.
Let me return to HD.
I cannot get better from HD. Does that mean I am not deserving of medical care?
This idea of Dr O’Sullivan’s sounds light and positive, but it is dangerous, exclusive, and frankly eugenic. It is saying people who cannot be cured, should be excluded from treatment.
Am I not allowed to say I have ADHD because that’s a harmful label? What about saying I have dyslexia? Or depression? Or anxiety? Dr O’Sullivan is convinced these are widely arbitrary. Not to mention based in some horrifying ablest thinking that some conditions are more important and valid than others. Who gets to sign off on what is an acceptable condition to talk about and which ones should I be in the closet about? Madness.
She then moves on to just saying the quiet part loud and intoning seriously ‘ADHD medications offer only a brief improvement; why are we medicating behaviour when no long term studies have shown this to be helpful, or even proved that it isn’t harmful?’ This is a straight-up lie. ‘Stimulant medications have been prescribed for ADHD for more than 40 years, so there is a lot of research showing that they are safe and effective’.
I don’t disagree with Dr O’Sullivan that medications have side effects, medications don’t work for everyone. But to take single stories of suffering, and then advocate for the refusal ofaccess to medical support and treatment is barbaric, not to mention unscientific. I have been on my own NHS Odessey to try and find some antidepressants that worked for me, and I am back at square one. Have I been calling for people to not be prescribed anti-depressants? Absolutely not. That would be madness.
Let’s go through Dr O’Sullivan’s preferred treatment for ADHD, shall we? Firstly, never use the label ADHD; never believe you are sick; take no medication; be very cautious about accessing diagnoses; and (she’s also discussing autism here)‘ we instead saw these conditions as related to our lives, there might be things we could change to improve matters’. Ground breaking, what neurodivergent activists have been saying for decades, tacked onto a philosophy that encourages silence and ignorance.
Either Dr O’Sullivan believes in moon logic, or I don’t think she believes these conditions exist; simply the latest entries in her imagined plague of psychosomatic conditions.
I do agree with Dr O’Sullivan that the health care system is broken. My entire life has been the NHS being repeatedly shot by successive UK governments: the 2008 financial crash, austerity, Brexit, more austerity, and on, and on.
The group of people who are seeing over medicalisation and over diagnosis are the wealthy, and of the increased privatisation of the medical system. Those who have the money can spend it on whatever medical test they desire. It is these people using up the limited and valuable medical expertise available. Is that a problem of people seeking medical diagnosis, her dreaded labels, or a is that a problem of wealth in a broken heath care system?
The more realistic issues that the rest of us face with accessing medical diagnosis are those of medical discrimination, and ableism within the system. Doctors like O’Sullivan, for example, who are actively telling people to not access medical care. The long history of medical racism resulting in people not believing a word out of people of colour. Doctors who still believe if you are fat you cannot receive medical treatment. or people who simply ignore autistic people when they make decisions for their own bodies, particually trans or non-binary atustic people. Not to mention the return of rampant medical queerphobia, and moral panic of transphobia, and a complete lack of place for non-binary and intersex people to advocate for themselves. When it comes to ADHD & autism, the rampant sexism still rife in the medical establishment’s approach to diagnosis.
When it comes to accessing medical support, the issue for the majority of people is not this imagined over-abundance Dr O’Sullivan is so afraid of. In the real world, it’s too little medical support, too late.
I happen to agree more with Mark Fisher in Capitalist Realism: Is There No Alternative? Fisher and Dr O’Sullivan are both trying to answer the question of where has this rise of medicalisation of young people come from. Dr O’Sullivan advocates sticking our heads in the sand and believing we are simply embracing too many labels and diagnosis. Fisher understands the world we live in is on fire. Yet, I am expected to find an individual solution to that structural problem: within my own mind or my family or my upbringing; or be mad. So many more of us are mad.
I have acquired a number of labels over the years, and none of these labels are things I can be cured from. That is a good thing, not a bad thing. It puts me in community with wonderful people every day. People who lose their minds over labels, of “too much” knowing are often the first people to deny the true diversity of humanity.
I had a hunch Dr O’Sullivan’s push for a supposed rise psychosomatic conditions was a dog whistle for bullshit pseudoscience. And wouldn’t you know it, I was right. I am going to leave her equally fanciful and comments about Long Covid to an actual medical professionall - Elke Hausmann, a GP, with Long Covid herself – but suffice to say there is a fairly obvious pattern to O’Sullivan’s “theories”.
Dr O’Sullivan is a neurologist specialising in epilepsy, has risen to media attention and fame though a series of books about how there is an epidemic of psychosomatic illnesses. To me she is in the well-trodden path of Ben Carson, Jordan Peterson and Kathleen Stock; Of experts in some other area, expounding like a real expert in places well out of their realm. Autism is not Huntington’s is not epilepsy. You wouldn’t ask a shipwright their opinion on a used hatchback.
I am disappointed but not surprised to learn that the talk was heaving with keen listeners and readers. Sadly, the conspiracy minded gig of just asking questions about perceived medical authority, has never been more lucrative. If Dr O’Sullivan was genuine about this medical hypothesis about psychosomatic illnesses, she would have conducted some medical research. Her last peer reviewed publication wouldn’t be over ten years ago. No instead she’s avoided the need to provide medical evidence for her stories and has been publishing books to the general public as a medical grifter since 2015. Much more lucrative, much more fame that way. I couldn’t be more thankful to the actual scientists who are pushing back against Dr O’Sullivan. Including Hausmann earlier, and David Tuller, DrPH who’s review of review of Dr O’Sullivan book described them as ‘compelling fairy tales’. Most of the reviews from the media and professional journalists, who should know better, are glowing. Those of us with experience, who can describe the bull shit as bull shit, need to speak up.
Edinburgh International Book Festival, I really think this talk should not have made it through the screening process for misinformation and the spread of ableist, damaging ideas. At the very least, it should not have gone unchallenged in that same public forum she was provided. Here is my challange.
Post Script
I wrote this on the 22nd September, in a 7 hour writing session as I furiously needed to right this huge injustice I had just experienced, in a way that has nothing do with ADHD. For as long as there has been people there has been HD. On Wednesday 24th, there was the first bit of good news about HD in human history. Congratulations to Ed Wild and Sarah Tabrizi, and everyone working on the uniQure gene therapy study.
I have not changed this piece because at the time I wrote it, everything I talked about, the systemic hopelessness. Was true, and this systemic hopelessness was the space Dr O’Sullivan was conducing her grift within.