The Curse of Diagnosis Trauma
The Curse of Diagnosis Trauma
The Self-Fulfilling Prophecy of Hopelessness Given at Diagnoses of Chronic Conditions
Introduction
Curiously synchronous, this morning, a member of our facebook group posted a link to an article on the UCLA Health website entitled “Delivering the bad news right: report says Parkinson’s disease diagnoses must include a message of hope”. Synchronous, because I have been warming up to write this substack article on the very same topic for some time, especially as a specific example of the general subject I wrote about in my previous article:
The UCLA article tempers what I was going rail against here, as it seems that the medical world is starting to cotton on and catch up with the issue, after all. The title of the UCLA article says it all really, but lets dive in to it and see what they have say. Note, although they are talking about PD specifically here, the very same conclusions apply to the diagnosis of many other chronic conditions out there.
The UCLA Article
“… limited patient access to movement disorder specialists means the job of delivering the often-devastating, lifechanging news falls on primary care physicians or community neurologists who may not have the necessary expertise for this sensitive task.”
Although in my experience [see below], and that of many other folks with chronic illnesses around the world, having access to an expert doesn’t necessarily help with this.
“A new report by a UCLA neurologist and collaborators draws upon patient voices and lived experiences to identify the common pitfalls of Parkinson’s diagnoses and create a guidebook for how medical providers – from seasoned specialists to rural community physicians – can avoid them.”
So good that it is pragmatic, beyond just highlighting that there is a problem, and that they are using real world experience too.
“A lot of people say ‘I’m sorry, you have Parkinson’s.’ In fact, I think it’s a very treatable disorder. Giving hope, giving the patient agency is a critical part of the message. So instead, the doctor should say ‘you have Parkinson’s and these are the things that you can do to live better and here are some people who can support you and I’m part of your team,’ Subramanian continued.”
I also once made a recommendation some years back of just what support folks with PD should get at the point of diagnosis. In my view, I wrote that the support anyone with any chronic illness diagnosis needs to be receiving from the outset, should at least include:
mental health [counselling/therapy] and stress management;
diet and nutrition advice and support [ongoing!];
movement and music therapy programmes [tailored!];
to receive more than just a ten minute stressful appointment with one neurologist every six months;
agreed upon written targets, such as working towards drug burden reductions;
access to the shared experience of other people with similar diagnosis, these to count as equally valid and relevant as the advice of neurologists [good to see the UCLA report is a step towards this];
mechanisms to inform other folk with similar diagnosis of their own experiences too, so that shared stories form a knowledge database;
neurologists and other healthcare practitioners to be expected to undergo regular continual professional development with a reasonable expectation that they can demonstrate a good awareness of the findings of the most recent World Parkinson's Congress meeting [PD specific].
for it be recognized that recovery from PD is not just about a cure, but involves personal growth, self-realization and necessary change of lifestyles which we now know contribute to the original decline into the disease.
Back to the UCLA article.
“How a diagnosis is delivered and the words that are used can impact a patient for years, with some patients falling into long periods of demoralization and hopelessness. These recommendations include having doctors provide guidance and education for how they should care for themselves; new treatment options; coping strategies; and what lifestyle choices they should incorporate from diagnosis.”
I can’t help to point out the irony, however, that the UCLA article itself includes the ultimate hopelessness line:
“there is no known cure for the disease”,
thus denying not only the voices, but also the existence, of those who have indeed reversed completely their diagnosis before.
The Curse
What I was originally going to write about, before I saw the UCLA article, was how the way in which diagnoses are currently being delivered, especially the hopelessness aspect, is a form of a trauma in of itself, how this sets up people to fail, and how this induces a negative expectation effect, or nocebo effect, which is very strong in people with chronic conditions. I was going to coin the phrase “Diagnosis Trauma” to describe this, and I was going to point to the interview which Prof. Andrew Huberman did with Dr Alia Crum on the very latest science of placebo, nocebo, mindsets, and other expectation effects, and just how profound this is.
However, given the introduction to this theme provided by the UCLA article, I will simply add my experience to the voice of folks who have received a diagnosis, and also some further insights from a clinician.
My Experience
After the initial diagnosis with one of the neurologist's interns, an appointment was made for few weeks later with the neurologist herself. That appointment still haunts me and my family. Remember, we knew nothing at all about PD at the time and I made no effort to read up on it, because I was relying on the specialist to give me the expert information I needed. I assumed she would be there to answer all my questions. I met that particular neurologist only once. In the half hour I sat in the office, I was told firstly that the MRI scan indicated that I had something called Parkinson’s Plus – a virulent, fast decline form of the disease which does not respond to drugs. This diagnosis turned out to be incorrect.
It is my recollection that, still not armed with much information, I was asked to make a choice between starting drug therapy or wait to be put into the care of PD specialist neurologist at my local hospital. Still desperately asking for clarifications and more information, the appointment ended when the neurologist said, putting a hand on a stack of case notes on the desk, “I’m going to have to ask you to leave now, because I have this pile of patients to get through”. You will understand why these words have stayed with me verbatim. You will understand the long term damage this did to me, too, I hope, and why what happens at diagnosis of chronic conditions, in my view, is in dire need of a system wide agreed upon set of best practice guidelines.
The Sword and the Bone
Another important treatise on this topic, which supports the findings of the UCLA article, is "Some unclassical considerations on the mechanisms and neurosurgical treatment of Parkinson’s disease" Prof. Dr. Med D. Jeanmonod, in 2013, where he also discusses the impact of current diagnosis of hopelessness.
The Professor is the inventor of a novel, highly targeted ultrasound procedure for Parkinson's Disease called called a "pallidothalamic tractotomy (PTT)", and he is the lead neurosurgeon from the Swiss clinic where this is being pioneered. I personally know people for whom this procedure has worked dramatically well.
Below are some relevant excerpts.
"The classical message today about Parkinson’s disease (PD) is that it is a „neurodegenerative“ progressive disease, and that treatments, drugs and neurosurgery, can only reduce its symptoms but not stop its progression. I would like to make here a series of points questioning some established ideas about this disease, to test if we are facing scientific facts or dogmas. one, the «neurodegeneration» idea is questionable and represents a most severe emotional load for the patients, a sort of Damocles sword hanging over their heads and threatening the essence of what they are. Secondly, the idea that neurosurgical interventions can only be symptomatic has also to be reconsidered. "
"Having a brain disorder in itself is no easy task to master for anybody. If this disorder is claimed to be a progressive unavoidable brain melting down with its associated deficits, we can imagine the immense emotional challenge at hand! The situation corresponds to the imposition of a threatening Damocles sword [illusion of imminent and ever present peril] above the heads of the patients, and a perfect paradigm for a «pointing the bone» threat [the practice (as among Australian Aborigines) of condemning someone to death by pointing a sharpened bone that has been enchanted with a curse at the person whose death is desired] as described in ethnology, i.e. the block of brain and then the body functions due to a imposed and believed death threat. I mentioned above the demonstrated relevance of stress in the parkinsonian experimental domain."
"The ghost of «neurodegeneration» should at best be abandoned, as it represents a massive disease concept inductor, feeding on the threat and fear of brain annihilation. Instead, well qualifiable cell death mechanisms should be considered as to their cause and effects."
"The integration of the psycho-emotional dimension is important in all our field as it is in the whole of medicine! In the case of Parkinson’s Disease, it is fundamental, because of the Damocles sword of brain threat placed over the heads of our patients. A patient of mine told me one day that the oncologist of his friend was kinder to him than his neurologist to himself, because he gave him at least a chance!"
"Parkinsonian patients deserve to be liberated from unbased and vague concepts and dogmas, and offered what modern high-tech and also integrative medicine can give them. "
To read more of my own personal journey, members of our online Hope Community area have access to the “Gary’s Story” section, which I am writing [together with some vlogs] in weekly installments in lieu of a writing a book. This is also a way to financially support our work.
In my own experience of being diagnosed with 'life long' illness, once I had found a way through and out the other side, the diagnosis was then removed as a 'mistake'. Thus, they invalidated my experience, my self-care and my journey. It seemed to me that once I was no longer a viable customer for their drug pushing that they were no longer interested. Being able to pass on my route to wellness to other patients did not seem to be anything that they were interested in.
You are so accurate in your assessment of how doctors give diagnoses. Two decades ago, a doctor diagnosed my hearing loss with the comment "there's nothing that can be done for it". I was in despair, but fortunately the next day was seeing my cousin the audiologist, who said, "you can hear with hearing aids" - which the doctor had not even mentioned as an option to help me hear. The doctor only cared about what he could or could not do, not what would help me.
That stuck with me, too!